Medicine in Canada: A Patient’s Guide for Informed Health Decisions
Emerging Treatments
Health Canada's recent approvals in 2025
CADTH/CDA call for patient input
Diversity, Inclusion, and Equity
The Importance of Clinical Trials and Patient Involvement: Shaping the Future of Medicine
Mental Health
Reading for Well-Being
That Summer Feeling…How Summer Affects Our Mental Health…
The Rise of Allergies and Stress
Daily News and how it impacts your Mental Health
Senior Health
Starting the Conversation: When to Talk to a Parent About Moving into a Retirement Home
Joyful Aging
Pediatric Health
Genetic Testing and Screening in Newborns: Implications for Treatment in Canada
Childhood Dementia: A New Approach to 100+ Rare Genetic Neurodegenerative Conditions
Advocacy Spotlight
Lupus Ontario Advocating for Government-Funded Vaccines for the Immunocompromised Community
Introducing the Health Advisory Network
StayWell
Patient Journey
When Systems Fall Short, Patients
Scaffold: How AI Helped Me Navigate Cancer
From Despair to Hope: My Journey with Leukemia and CAR T-Cell Therapy
Living Well
The Water Myth
Soak It Up: 3 Intentional Ways to Reclaim Summer
From Whisper to Wellness: The Power of Preventive Care
The Dirty Dozen & Clean Fifteen Resepies Ask the Professional
Founders Note
Welcome to our 9th Issue of E3 Advocacy. A digital magazine for Patient Advocates and Patient Centricity
As the founder of E3 Advocacy Magazine, I am proud to present this issue dedicated to Genetic Testing and Personalized Medicine.
This rapidly advancing field is transforming how we understand, prevent, and treat disease, shifting the focus from a one-size-fitsall approach to care that is tailored to each individual’s genetic makeup. As a patient advocate, I have seen firsthand the hope that personalized medicine brings to those facing complex diagnoses. But with innovation comes the need for education and empowerment. Patients must be informed participants in their healthcare decisions, understanding both the potential and the limitations of genetic testing. This issue aims to demystify the science, highlight ethical considerations, and elevate the patient voice in conversations about access, equity, and informed choice At E3 Advocacy, we believe empowered patients lead to stronger systems and that starts with knowledge.
We're deeply grateful to our readers for their continued interest and support. Your engagement drives us to bring insightful and valuable content to each issue. By subscribing to Heal Canada Digital Magazine, you'll stay connected with us and gain access to future issues that explore topics that matter to you and the healthcare community. Become a subscriber and visit our websiteat https://www.healcanada.org toenjoyallthebenefits.
We are humbled at the momentum we are gaining with the information to our readers. This digital publication is being read by patient advocates, patients and care partners across the world.
Thank you for being a part of our journey, and welcome to anotherenlighteningissue!
Genetic Testing & Personalized Medicine in Canada: A Patient’s Guide for Informed Health Decisions
by Cheryl Petruk, MBA, DBA Student
The healthcare landscape in Canada is undergoing a significant transformation with the advent of personalized medicine. Central to this shift is genetic testing, which allows for the tailoring of prevention, diagnosis, and treatment strategies to the unique genetic blueprint of each individual. Unlike traditional medicine, which typically follows a one-size-fits-all approach, personalized medicine recognizes that every patient is genetically unique, and so their care should be too.
For patients, this evolution represents both hope and complexity. While genetic testing promises earlier detection, more precise treatment, and potentially improved outcomes, it also brings forward a host of considerations—ethical, financial, emotional, and practical. What does a genetic result mean? How will it impact treatment choices, lifestyle decisions, or insurance coverage? And how can Canadian patients navigate a system where access and implementation vary widely across provinces?
This article offers a comprehensive guide to genetic testing and personalized medicine in Canada, with a focus on what patients need to know. From understanding the types of tests available, interpreting results, managing emotional and familial implications, and ensuring privacy and data security, we aim to empower patients with the knowledge and confidence to make informed health decisions.
Understanding Genetic Testing Types of Genetic Testing
As a patient, it is important to understand that not all genetic tests serve the same purpose. Depending on your health status, personal history, and clinical goals, your healthcare provider may recommend one of the following:
1. Diagnostic Testing: Used when symptoms are already present, this test confirms or rules out a specific genetic condition. For example, if you have signs of breast cancer and a strong family history, a BRCA1/2 gene test may help guide your treatment.
2. Predictive Testing: This is offered to individuals who do not have symptoms but have a family history of a genetic disorder. It can help you understand your risk of developing conditions like Huntington’s disease or hereditary breast and ovarian cancer.
3. Pharmacogenetic Testing (PGx): Evaluates how your genes influence your response to medications.
Genetic Testing & Personalized Medicine in Canada: A Patient’s Guide for Informed Health Decisions cont'd
As a patient, knowing whether a medication is likely to work well or cause side effects can save time, improve outcomes, and reduce trial-and-error in prescriptions.
4. Carrier Screening: Tests whether you carry a gene for a genetic disorder that could be passed on to your children. This is especially relevant for individuals planning to start a family.
5. Tumor Profiling (Somatic Testing): If you have cancer, this type of test analyzes the genetic mutations within your tumor to determine which treatments may be most effective.
6. Direct-to-Consumer (DTC) Testing: Available through companies like 23andMe, these tests can provide information about ancestry and some health risks. However, they are not a substitute for clinically validated medical tests.
What Patients Should Know
Ask your healthcare provider what kind of test is appropriate for your situation. Understand that not all tests are equal in terms of reliability and clinical relevance. Ensure the test you are taking is validated and clinically actionable. Seek support from a genetic counselor if you are unsure about what a test result might mean.
Patient Perspective
Many patients report feeling overwhelmed when first presented with the option of genetic testing. Concerns often revolve around the impact of results on emotional well-being, family dynamics, and even future opportunities, such as employment or insurance. Despite these fears, patients who undergo testing often describe a sense of empowerment and relief in having greater clarity about their health.
The Canadian Context
Federal Oversight
Canada’s Genetic Non-Discrimination Act (GNDA) is critical for protecting patient rights. Enacted in 2017 and upheld by the Supreme Court in 2020, this legislation prohibits anyone from requiring you to take a genetic test or disclose results as a condition for obtaining goods or services, including insurance or employment. Violators can face fines or even imprisonment.
Bridging the Gap: How Patient Advocacy is Shaping Access to Medications in Canada
Provincial Implementation
Because healthcare is a provincial responsibility, access to and funding for genetic testing differs widely:
British Columbia: Offers publicly funded pharmacogenetic testing (e.g., Pillcheck) and supports integration into family practice.
Ontario: Ontario Health is exploring the provincewide implementation of pharmacogenomics (PGx) testing.
Quebec: A leader in genomic medicine, Quebec provides access through designated genetics clinics.
What Patients Should Know
Coverage and access vary—ask your provider what is available in your province. Some tests are only covered if you meet certain clinical criteria.
Patients may face long wait times or need to advocate for access.
Patient Perspective
Many patients are surprised to learn that they must travel outside their region or pay out-ofpocket for tests available in other provinces. This can cause significant inequity, especially for rural, Indigenous, and lower-income populations. Patients consistently advocate for a national genomics strategy to ensure standardized, equitable access.
The Patient Journey Deciding to Test
The decision to pursue genetic testing should never be taken lightly. Patients are encouraged to: Reflect on their goals (e.g., risk prevention, diagnosis, treatment selection).
Discuss the options thoroughly with a healthcare provider. Consider emotional readiness for potentially life-altering information.
For patients, informed decision-making is central. This means understanding the test, possible outcomes, implications, and alternatives. If you feel rushed or unclear, request additional time and information.
Informed Consent and Counseling
Pre-test counselling helps patients understand:
Scope of Testing: What the test can and cannot reveal. For example, a negative BRCA test doesn’t mean you are risk-free; it may simply mean a mutation wasn’t detected.
Secondary Findings: Some tests may uncover unexpected information, such as predisposition to diseases not initially under consideration.
Family Implications: Genetic information is shared with family. You may feel responsible for informing relatives who may also be at risk.
Bridging the Gap: How Patient Advocacy is Shaping Access to Medications in Canada
cont'd
Privacy & Security: Understand how your data is stored, who has access to it, and whether it will be used in research.
Emotional Preparation: Anticipate anxiety, relief, or grief. Genetic counsellors are trained to help you navigate this emotional terrain.
Receiving and Interpreting Results
Results can be complex, and interpretation must occur in a clinical context:
Positive Result: Indicates presence of a pathogenic variant. May prompt changes in treatment or screening.
Negative Result: Indicates no known variant, but not a guarantee of no risk. Surveillance may still be warranted.
Variants of Uncertain Significance (VUS): These are changes in DNA with unknown implications. May require periodic re-evaluation.
Post-Test Considerations
After testing, many patients are left wondering, "What's next?" Here are some considerations:
Specialist Referrals: Depending on the results, you may need to follow up with an oncologist, cardiologist, or other specialists.
Psychological Impact: It's normal to feel a range of emotions. Seek mental health support or join a patient group.
Family Communication: Decide how and when to share information with family members.
Genetic counselors can assist with this.
Lifestyle Adjustments: Based on risk, some patients choose preventive surgeries, early screening, or lifestyle changes.
Privacy and Ethical Considerations
Data Security
Patients should be informed about:
Storage Location: Is the data stored in Canada or internationally?
Third-Party Access: Will insurers, employers, or researchers access it?
Consent for Research Use: Are you comfortable with your anonymized data being used in research?
Bridging the Gap: How Patient Advocacy is Shaping Access to Medications in Canada
Legal Protections
The GNDA provides protection, but there are gaps:
Life & Disability Insurance: May still be affected by genetic information. Consider obtaining coverage before testing.
Workplace Policies: Some private employers may not be fully informed of the GNDA.
Ethical Dilemmas
Obligation to Inform Family: Should you notify relatives if you discover a hereditary risk?
Children and Genetic Testing: Should minors be tested for adult-onset diseases?
Health Equity: Many new tools are less effective for non-European ancestry groups, raising ethical concerns around fairness.
Patient Perspective
Costs and Coverage
Public and Private Funding
Public Programs: Diagnostic tests for cancer or rare diseases often covered.
PGx Testing: Covered in BC, limited in other provinces.
DTC Testing: Typically out-of-pocket, ranging from $200–$700.
Insurance Coverage
Extended Health Benefits: Some plans reimburse PGx or DTC testing.
Health Spending Accounts: May be used for test costs.
Patients often express frustration over the high cost of valuable tests not covered by provincial plans. There is a strong call for expanded coverage, especially when tests can prevent costly hospitalizations or improve treatment efficacy.
Emerging Trends in Canada
Point-of-Care Testing
Programs like the RAPID GENE study at the Ottawa Heart Institute allow for immediate genetic testing in clinical settings. For example, patients undergoing heart procedures are tested for genes that affect medication metabolism, allowing for instant adjustments.
Artificial Intelligence (AI)
AI is increasingly used to interpret genetic data, find patterns, and assist in clinical decisionmaking. While promising, patients should understand that algorithms are only as good as the data upon which they are built, which often excludes minority populations.
Polygenic Risk Scores
PRS aggregate small effects from many genes to provide risk estimates. Patients should ask about the accuracy of these scores in their ethnic group, as PRS are less accurate for nonEuropean populations.
National Strategy Development
There is momentum building for a National Genomics Strategy. Patient advocacy groups are pushing for standards, consistent access, and transparency. Your voice can influence policy.
Bridging the Gap: How Patient Advocacy is Shaping Access to Medications in Canada
Key Questions Patients Should Ask
Before, during, and after testing, ask:
What exactly is this test looking for?
How accurate and reliable are the results?
What will happen if something unexpected is found?
How will this affect my treatment or medications?
Who will have access to my genetic data?
Will this affect my insurance?
Should my family be tested as well?
Resources for Canadian Patients
Canadian Cancer Society: Offers tools and information about inherited cancer. Genetics Education Canada: Patient-friendly resources about genetic conditions.
Privacy Commissioner of Canada: Learn about your rights and how your data is protected.
Canadian College of Medical Geneticists: Lists certified genetics professionals.
Provincial Health Services: Each province has its own genetic services directory.
Genetic testing is no longer the domain of rare disease diagnostics or elite cancer centers. It is becoming a routine part of modern healthcare, opening doors to proactive, personalized, and precise interventions. But with this progress comes responsibility for clinicians, policymakers, and most importantly, patients.
As a patient in Canada, you are your own best advocate. Stay informed, ask questions, demand transparency, and ensure that your values guide your healthcare decisions. Genetic testing can empower you with knowledge, but only if you understand its possibilities, limitations, and implications.
In the spirit of patient-centred care, let us move forward not just with cutting-edge science but with compassion, equity, and informed consent at every step of the journey.
Patient Connection Form
CACHEducation is evolving to better serve the needs of patient advocates and healthcare professionals with its rebrand to CACHEducation Academy. This transformation reflects an expanded commitment to delivering high-quality, structured learning experiences tailored to the ever-changing landscape of patient advocacy and healthcare education. As part of this rebrand, CACHEducation Academy will introduce Advanced Curriculum offerings starting in September 2025, providing deeper insights, specialized training, and enhanced skill development for those looking to elevate their expertise. This next phase marks a significant step forward in strengthening the capacity and impact of patient advocates through comprehensive and innovative education.
"Enrolling in CACHEducation was a game-changer for me as a patient advocate. The program provided invaluable knowledge, practical skills, and a supportive community that empowered me to make a real impact in healthcare advocacy."
Emerging Treatments
New treatments offer hope to patients and their loved ones. Here, we present new therapies that are available to Canadians.
This section also addresses challenges around access to new medication. Our readers will find important information to help them understand Canada's drug review processes.
An informed and engaged patient is an empowered one. We aim to equip our readers with the tools and knowledge to navigate the complex healthcare landscape because, more than ever, patients need to raise their voices to get access to services. Accessing innovative medicines can save patients' lives.
Health Canada's recent approvals in 2025
by Brigitte Leonard, Ph.D.
Health Canada has approved four new innovative medications since the last issue of the E3 Advocacy in April 2025 (Table 1).
A New Option For Canadians Diagnosed With Pompe Disease
Pompe disease is a rare genetic disorder which damages muscle and nerve cells throughout the body. Pompe disease is caused by mutations in the gene (GAA) responsible for producing an enzyme (acid alpha-glucosidase) which breaks down glycogen into glucose within the cell. The excess carbs that we eat are stored in our bodies as glycogen in the liver and muscle cells. Glycogen will be broken down into glucose to provide energy on demand. People with Pompe disease cannot access this energy reserve, and the accumulation of glycogen leads to progressive muscle weakness, particularly in the heart, skeletal muscle, liver and nervous system. Without effective treatment, Pompe disease can lead to lifethreatening complications.
Health Canada approved Amicus Therapeutics' innovative treatment, Pombiliti (Cipaglucosidase alfa), in April 2025 Pombiliti is an enzyme replacement therapy that can be used in combination withmiglustattotreatPompedisease
The approval of Pombiliti has been based on a phase III clinical trial called PROPEL. Pombiliti plus miglustat provide potentially clinically meaningful improvements in motor and respiratory function compared with the current standard therapy (alglucosidase alfa plus placebo) with a comparablesafety profile.
Primary Biliary Cholangitis (PBC) is a rare, chronic, progressive autoimmune disease of the liver affecting mainly women PBC is caused by antibodies attacking the bile duct cells, progressively destroying the small bile ducts in the liver and impeding bile flow. The bile accumulates in the liver, causing damage, fibrosis and cirrhosis. Cirrhosis increases the risk of complications, including liverfailureandapotential needforatransplant.
Symptoms are severe pruritus, weakness, fatigue, dry eyes and mouth, abdominal discomfort, osteoporosis, high cholesterol, and jaundice. Current treatment efficacy is limited to addressing symptoms and slowing down the progression. UDCA, a tertiary hydrophilic bile acid, is the first-line drug approved for patients with PBC; however, 40% of patients do not respond adequately and experience significant adverse effects. Liver transplant is an extreme procedure with several limitations.[1] Obeticholic acid, a selective farnesoid X receptor agonist, is approved as a second-line therapy. However, less than 50% of patients achieve a biochemical response. It can aggravate pruritus.[1] These limitations of currently available treatment options highlight the pressing need for an effective and better-tolerated therapy for patients suffering from PBC.
Health Canada approved Ipsen Pharmaceutical's innovative treatment, Iqirvo (elafibranor), in April 2025. Iqirvo is an oral treatment targeting two forms of a molecule called PAPR. Iqirvo allows for reducing bile acid production and improving bile flow, which helps alleviate liver damage. The approval of Iqirvo has been based on a phase III clinical trial called ELATIVE. Iqirvo provides a significant improvement in biochemical response for PBC patients with an inadequate response or intolerance to UDCA. Iqirvo is a crucial option for helping to reduce disease activity and ease symptoms. However, we're still awaiting data to see whether these translate into long-term health benefits through real-world evidence analysis and the Phase III trial called ELFIDENCE.
Introduction Of A New Treatment Option For Canadians With Psoriasis
Psoriasis is a common, long-term, chronic skin disease that causes a rash with itchy, scaly patches, most commonly on the knees, elbows, trunk and scalp. In psoriasis, the life cycle of skin cells is significantly accelerated, leading to a buildup of dead cells on the epidermis surface. It can be painful, interfere with sleep and make it hard to concentrate. The condition tends to fluctuate in cycles, with periods of flaring for a few weeks or months, followed by periods of subsiding for a while. Common triggers in people with a genetic predisposition to psoriasis include infections, cuts or burns, and certain medications. Treatments are available to help you manage symptoms. You can also try lifestyle habits and coping strategies to help you manage psoriasis more effectively.
However, treatment failure rates for psoriasis can be relatively high, ranging from 48% to 75%, depending on the treatment type and individual patient factors, underscoring the need for additional options.
Health Canada approved Organon's innovative cream, NDUVRA (tapinarof), in April 2025 The approval of NDUVRA is based on the results from two phase III pivotal studies called PSOARING 1 andPSOARING2.
NDUVRA was highly efficacious in reducing pruritus across multiple patient-reported outcome measures, with rapid, statistically significant, and clinically meaningful improvements. The high proportion of patients achieving the treatment target of an itch-free state at week 12 (50%) is a noteworthy clinical outcome for a non-steroidal topical cream in the treatment of mild to severe plaque psoriasis.
AndWhatAboutThyroidEyeDisease?
Thyroid Eye Disease (TED), also known as Graves' eye disease, is an autoimmune disorder that affects the tissues and muscles around the eyes, often causing swelling, bulging eyes, and other vision problems It's not a direct disease of the thyroid itself, but somewhat related to an abnormal immuneresponse
The body produces autoantibodies (typically against TSH receptors the primary receptor that controls thyroid activity but other components can be involved). These autoantibodies and relatedimmunecellsattack tissueswithintheeyesocket(orbit).
The conventional treatment for TED focuses on reducing inflammation and relieving symptoms while preserving vision. They varied from eye drops and lubricants to antiinflammatory medication, surgery, and radiotherapy. While current treatments can reduce disease activity and improve symptoms, a significant unmet need remains for more effective, less invasive, and personalized therapies, particularly in the areas of chronic disease management, disease prevention, and enhancing health-related quality of life.
Health Canada's recent approvals in 2025 cont'd
Health Canada approved Amgen's innovative therapy, Tepezza (teprotumumab), in April 2025. Tepezza is indicated in adults for the treatment of moderate to severe active TED. It is an antibody that targets the insulin-like growth factor-1 receptor (IGF-1R) on orbital tissues, thereby disrupting inflammation and tissue swelling in TED.
The approval of Tepezza has been based on two phase III clinical trials called OPTIC and OPTIC-J. Teprotumumab significantly improved eye bulging compared to placebo in longstanding, lowinflammation TED, demonstrating efficacy regardless of disease duration or activity. The safety profile was comparable to that previously reported.
Brigitte Léonard, Ph.D.
Brigitte has had the privilege of working in Pharma for over 20 years, contributing to bringing life-changing treatments to patients with the highest ethical standards. Now, she wants to share her knowledge and utilize her scientific, strategic, and communication skills to help the patients’ community.
She obtained her Ph.D. in Biomedical Sciences from Université de Montréal in 2003. Her doctoral research was conducted at Maisonneuve-Rosemont Hospital Research Center. She developed a quantitative diagnostic assay in non-Hodgkin's lymphoma and evaluated the relevance of this marker in the patient's outcome.
CADTH/CDA
by Brigitte Leonard, Ph.D
The Canadian Agency for Drugs and Technologies in Health (CDA/CADTH) is an independent, not-for-profit organization that provides evidence-based assessments on drugs, medical devices, and healthcare technologies to support informed decision-making in Canada's healthcare system. CDA/CADTH collaborates with federal, provincial, and territorial governments (excluding Quebec) to evaluate the clinical effectiveness, cost-effectiveness, and broader impact of new and existing healthcare interventions. By conducting Health Technology Assessments (HTAs), providing reimbursement recommendations, and developing guidance reports, CDA/CADTH plays a crucial role in shaping healthcare policies, ensuring that patients, healthcare providers, and policymakers have access to reliable, science-driven information to improve health outcomes and optimize resource allocation.
Exciting News from Heal Canada! We are thrilled to announce the launch of our new podcast series, Empowering Voices, dedicated to amplifying the stories and insights of patients, healthcare professionals, and advocates in the blood disorder and rare disease communities. Each episode will feature meaningful conversations on patient experiences, emerging research, and the evolving landscape of healthcare advocacy. Through Empowering Voices, we aim to educate, inspire, and drive change by bringing real-world perspectives to the forefront. Stay tuned for our first episode, coming soon because every voice matters!
Welcome to the Belonging, Diversity, Inclusion and Equity section of E3 Advocacy Digital Magazine. In this section, we provide information on ensuring that BDEI is part of the patient conversation in our Health ecosystem. Our focus is to illuminate the pathways through which individuals grappling with health challenges can not only find their voice but also harness it to drive their own journey.
Healthcare and the patient’s experiences should not be determined by social determinants of health.
We believe that an informed and engaged patient is an empowered one. Through enlightening articles, expert insights, and inspiring stories, we aim to equip our readers with the tools and knowledge necessary to navigate the complex healthcare landscape.
The Importance of Clinical Trials and Patient Involvement: Shaping the Future of Medicine
by Cheryl Petruk, MBA, DBA Student
Clinical trials are the cornerstone of modern medicine. From determining the safety and effectiveness of new treatments to enhancing the efficacy of existing ones, these studies have a direct impact on how diseases are diagnosed, treated, and managed. But as science has evolved, so too has the understanding that clinical research must not only serve the scientific community —it must serve the people. The active involvement of patients in clinical trials has shifted from being a passive concept to a critical element that ensures the relevance, accessibility, and ethical integrity of medical research. This article examines the multifaceted importance of clinical trials, the vital role of patient participation, and the transformative impact of incorporating patient voices into trial design and implementation.
What Are Clinical Trials?
Clinical trials are research studies conducted with human participants to evaluate the safety, efficacy, and potential side effects of medical, surgical, or behavioural interventions. They are essential for:
Testing new drugs or combinations
Investigating new ways to use existing treatments
Developing diagnostic tools or procedures
Enhancing the quality of life for patients with chronic diseases
Each clinical trial is carefully designed and conducted in phases (Phase I through IV), each with its specific purpose, ranging from assessing safety in small populations to evaluating long-term effects in larger, diverse populations. Without clinical trials, medical advancements would stagnate, and treatments would be based on untested assumptions rather than evidence-based science.
Why Clinical Trials Are Important
1. Advancing Science and Innovation
Clinical trials bridge the gap between scientific discoveries in the laboratory and real-world applications in hospitals and clinics. They are the only way to translate theoretical research into tangible outcomes for patients.
The Importance of Clinical Trials and Patient Involvement: Shaping the Future of Medicine cont'd
2. Ensuring Safety and Efficacy
Every drug or medical device must undergo rigorous testing through clinical trials before it can be approved for widespread use. This process ensures that treatments are both safe and effective.
3. Improving Public Health
Clinical trials contribute to the development of treatments and preventive strategies for a wide array of health conditions—from cancer and rare diseases to COVID-19 vaccines—thereby enhancing global public health.
4. Personalized Medicine
Clinical trials increasingly utilize genetic and molecular information to tailor treatments to individuals, offering hope for more precise and effective care in diseases such as cancer, autoimmune disorders, and rare genetic conditions.
3. Patient Involvement in Trial Design
Patient partners can contribute to:
The Critical Role of Patients in Clinical Trials
1. The Traditional Role of Patients
Historically, patients in clinical trials were viewed merely as study subjects. Decisions were made about them, not with them. Their participation was essential but passive, with limited understanding or influence over the trial's design or outcomes.
2. The Shift Toward Partnership
Modern clinical research now recognizes the value of involving patients as partners in the process. Patients bring lived experience, unique insights, and real-world perspectives that can dramatically shape research design, recruitment, retention, and relevance.
Protocol development: Providing feedback on what is feasible or burdensome in real-life scenarios.
Outcome selection: Helping identify what outcomes matter most (e.g., quality of life, symptom relief).
Recruitment and retention strategies: Suggesting culturally competent and accessible approaches.
Informed consent materials: Making these documents more understandable and respectful of patients' concerns.
Patient involvement results in trials that are more ethical, more inclusive, and ultimately more successful.
The Importance of Clinical Trials and Patient Involvement: Shaping the Future of Medicine cont'd
The
“Why” Behind Participation
For many patients, the idea of joining a clinical trial may seem daunting. However, participation is not just beneficial for science—it can also offer meaningful personal, societal, and humanitarian benefits.
1. Access to Cutting-Edge Treatments
Patients may gain access to promising new treatments before they are available to the general public, potentially improving their own health outcomes.
2. Active Role in Their Healthcare
Participating in a trial gives patients a proactive role in managing their health. It can also deepen their understanding of their condition and treatment options.
3. Hope for Future Generations
Many patients participate out of altruism—to help others with the same condition in the future. Their involvement contributes to a legacy of improved treatments and standards of care.
4. Equity in Research
Diverse patient participation helps ensure that trial results are generalizable and applicable to all populations, not just the few. Including underrepresented communities can help address health disparities and promote more equitable care.
Barriers to Participation and Solutions
Despite the benefits, several barriers prevent patients from participating in clinical trials:
1. Lack of Awareness
Many people are unaware that trials are available to them. Better communication, digital outreach, and physician engagement are critical.
2. Mistrust in the System
Historical abuses in research (e.g., the Tuskegee Study) have led to deep mistrust, especially among racialized communities. Building relationships, fostering transparency, and promoting community engagement are essential to rebuilding trust.
3. Logistical Challenges
Travel, childcare, work responsibilities, and cost can make participation difficult. Solutions include:
Remote monitoring or telemedicine options
Reimbursement for travel and expenses
Local trial sites and decentralized models
4. Language and Health Literacy
Complex jargon in consent forms or materials can alienate patients. Providing clear, culturally sensitive, and multilingual resources makes trials more accessible.
The Importance of Clinical Trials and Patient Involvement: Shaping the Future of Medicine cont'd
The
Importance of Co-Designing Trials with Patients
Co-design means developing trials with patients from the start. This practice:
Improves study relevance
Increases enrollment and retention
Enhances credibility and trust in the research
Strengthens regulatory and ethical compliance
Examples of successful patient involvement include the development of core outcome sets by the COMET Initiative and patient advisory boards for rare disease trials that influenced endpoints and study duration.
Real-World Evidence and the Patient Voice
Incorporating patient-reported outcomes (PROs) and real-world evidence (RWE) into trials captures the lived experience more accurately than clinical metrics alone. Patients help define what matters—whether it's fatigue, pain, or daily functioning—not just tumor size or lab results. Case Example – Cancer Clinical Trials
Cancer trials have led the way in patient engagement. Groups like the Canadian Cancer Trials Group (CCTG) and U.S.-based SWOG Cancer Research Network have embedded patient representatives on trial steering committees and protocol development teams. In hematological cancers such as myelofibrosis or leukemia, patients have contributed to:
Redefining trial endpoints
Highlighting quality-of-life concerns
Prioritizing manageable side effects
These efforts have improved trial design and uptake, making them more meaningful and humane.
Ethical Considerations in Patient Involvement
Ethics demands that research is not only scientifically valid but also respectful of the dignity, rights, and preferences of participants. When patients help shape trials, it:
Reduces the risk of harm
Increases informed consent quality
Promotes fairness and justice in research populations
The principles of autonomy, beneficence, and justice are better upheld when patients are seen as co-creators.
The Importance of Clinical Trials and Patient Involvement: Shaping the Future of Medicine cont'd
How Advocates and Organizations Can Help
Patient advocacy groups, like Heal Canada, CACHEducation, and EUPATI, play an instrumental role in:
Educating patients about trial opportunities
Supporting informed decision-making
Bridging the gap between patients, researchers, and industry
Advocating for more inclusive research policies
These organizations train patients to engage confidently and competently in the research process, from being advisory board members to co-authors of academic papers.
Policy and Regulatory Perspectives
Agencies like the FDA, Health Canada, and EMA are increasingly recognizing the value of patient involvement in regulatory decision-making. Guidance documents now encourage the inclusion of PROs and patient preference studies in submissions. Furthermore, rare disease frameworks such as the Orphan Drug Act (U.S.) and the Orphan Drug Regulation (EU) support patient involvement to guide meaningful trial outcomes in small populations.
Why It Matters
Looking Forward – A Vision for the Future
The future of clinical trials will be defined by:
Decentralized clinical trials (DCTs) to reduce participant burden
Digital tools to enable better patient communication and engagement
Artificial Intelligence (AI) to match patients with appropriate trials
Diverse recruitment strategies that target underserved populations
But most importantly, the future demands collaboration—researchers, industry, regulators, and patients working together to develop treatments that are not only effective but also aligned with patients’ values and lives.
Clinical trials save lives—not only by finding cures but by improving quality of life, extending survival, and offering hope. But they can only do so effectively when they truly reflect the needs, voices, and lived experiences of the people they aim to serve. Patient participation is not an optional add-on—it is a moral imperative and a scientific necessity. By involving patients as partners in research, we ensure that trials are not just technically successful but also personally relevant, socially just, and ethically sound. Whether you're a patient, caregiver, clinician, policymaker, or advocate, you have a role to play in shaping this new paradigm. The trials of the future belong to all of us, and we must build them together.
Mental Health
Welcome to the Mental Health section of E3 Advocacy Digital Magazine, a dedicated space where we embrace the journey towards mental wellness with open arms and open hearts. In this edition, we delve into the empowering world of patient advocacy, engagement, empowerment, and education. Our focus is to illuminate the pathways through which individuals grappling with mental health challenges can not only find their voice but also harness it to drive their own journey.
We believe that an informed and engaged patient is an empowered one. Through enlightening articles, expert insights, and inspiring stories, we aim to equip our readers with the tools and knowledge necessary to navigate the complex mental health care landscape.
Join us as we explore how patient advocacy, active engagement and comprehensive education can transform the experience of mental health care, turning obstacles into opportunities for growth and healing.
Reading for Well-Being
by Joanna Pozzulo, Ph.D.
Although the world can be a serious place, it also can be filled with joy and laughter. Finding something to smile about can be challenging at times, but we should make an effort. There's sound science behind it!
The science of humour? Do "science" and "humour" belong together? Turns out that they do! In "Humor, Seriously: Why Humor Is a Secret Weapon in Business and Life" by Jennifer Aaker and Naomi Bagdonas (2021), you'll learn about the evidence that suggests bringing more humour into your life may improve your wellbeing. So, what is the connection between humour and well-being?
For starters, the act of laughing or even the anticipation of laughing can decrease our stress hormone, cortisol, by about 39% and our fightor-flight hormone, epinephrine, by about 70%, making you feel calmer and less stressed. Adding humour to information might even help you remember it better. These were just some data the authors reported on in Humor, Seriously.
Suppose you think you're not a very funny person; don't worry. The book has several strategies to help you be funnier. Perhaps one of the easiest strategies is to laugh. According to the authors, laughing makes you funnier. My personal favourite was to be on the lookout for "funny"; chances are, there are some around you that you may not have noticed. I also appreciated the nod to "time." Sometimes, time needs to pass before you can see the funny side of a situation. What might be infuriating or awkward at the moment might be funny after some time has passed.
Overall, humour can relieve stress, allow us to make more meaningful connections, increase our creativity, and build our resilience. So have a read and a laugh for improved well-being.
Reading for Well-Being
For more evidence-based picks for well-being, sign up for the Reading for Well-Being Community Book Club, https://carleton.ca/mental-health/book-club-sign-up/
Check out the Reading for Well-Being Podcast for interviews with authors of my book picks, https://www.youtube.com/@ReadingforWellBeingPodcast
Happy reading (and listening)!
Joanna
Pozzulo, Ph.D.
Chancellor’s Professor Department of Psychology Director, Mental Health and Well-Being Research and Training Hub (MeWeRTH) https://carleton.ca/mental-health/ Carleton University
That Summer Feeling…How Summer Affects Our Mental Health…
by Stefanie Peachey, BA, MSW, RSW, ACC.FM
We’ve finally returned to warm weather, sunshine and holidays… but what does this mean for our mental health?
For most people, there are significant mental health benefits associated with the summer season.
According to University of Michigan research, the positive impact warm, sunny weather can have on mental health and mood are real.
"Being outside in pleasant weather really offers a way to reset your mindset,'' said Matthew Keller, the U-M post-doctoral researcher who led the psychology study. By getting outside for at least 30 minutes a day, your overall mood will improve. Why?
We tend to reduce our work hours
Most people take their vacation time during the summer months or cut back on working overtime or on the weekends. We might even leave work early on a Friday! The summer tends to give us a good excuse to take some much-needed rest and relaxation, and this is an important part of self-care that benefits your mental health.
We have more time to spend with family and friends
The sun provides a surge of vitamin D
Vitamin D intake is essential for the regulation of calcium and phosphorus absorption, maintenance of healthy bones and teeth, and can help to supply a protective effect against multiple diseases and conditions.
We tend to be more active
With the sun rising early and setting late and the temperature optimal for outdoor activities - like walking, running, riding a bike, swimming - people are more active on a daily basis during the summer months. As we all know, physical activity is a natural and effective mood-booster, so it makes sense that being active would have a role to play.
Summer also allows us to visit and spend quality time with family and friends. Evidence shows that good relationships (with family, friends and our community) are vital for our mental well-being
However, for others, summer can be a bummer in more ways than one.
You may have heard of Seasonal Affective Disorder (SAD), and assumed it is specifically a “Winter Depression”, but SAD is a type of depression that can affect people at any time of the year. Some people experience the symptoms of depression starting in the spring or summer months, with mild symptoms then progressing and becoming more severe. Why?
That Summer Feeling…How Summer Affects Our Mental Health… cont'd
Summertime stressors
The cause of depression during summer months is not yet fully known, but several possible factors can contribute to the development of symptoms, including:
Disruption in routine/schedule/habits due to vacation, children being out of school
Change in sleep and eating habits due to disruption in routine
Not being able to participate in summer vacations or outdoor activities due to limited finances
Health reasons preventing participation in summer activities, which could lead to isolation and sadness, and feelings of loneliness
Anxiety or avoiding participating in some outdoor summer activities due to concern about physical appearance
Extreme weather conditions
Hot weather usually causes people to feel tired, unmotivated to do very much and maybe even a little bit grumpy. However, extreme weather conditions are more serious for our health than that. Climate change worries aside, this has also caused alarm among the health and mental health communities.
There are a host of heat-related illnesses that are serious enough to result in hospitalization and death, including: dehydration, heat stroke, increased blood pressure and many other illnesses.
Some serious mental health issues result from the heat. This is evidenced by the fact that there is an increase in psychiatric hospitalizations during the summer months, an increase in suicide attempts, acts of violence, increased irritability and anger.
So, what can you do to ‘feel good’ this summer?
Let’s start with the basics of summer selfcare:
Drink lots of water or other liquids to prevent dehydration
Try to limit coffee and alcohol since they tend to dehydrate
Wear a hat when you are going out, even when temperatures are cooler and the sun is not intense
Wear sunscreen and limit your exposure to direct, intense sunlight
Try to do activities early in the morning or later in the evening when temperatures are cooler (gardening, yardwork, exercise, etc)
That Summer Feeling…How Summer Affects Our Mental Health… cont'd
Try to remain in air-conditioned environments if you are sensitive to the heat, and if you do not have air conditioning in your home, there are typically cooling stations or public spaces that can provide it for you
If you are on any medications, you may need to limit your exposure to sunlight, so it is essential that you talk to your doctor or pharmacist about any possible side effects of heat and sunlight with your prescription
Now for some summer self-care:
Avoid social withdrawal and social isolation by going out and engaging with a small group of friends and/or family
Try to stay active and engage in regular physical exercise for 30-45 minutes a day to increase your endorphin activity
Try to maintain a healthy diet and a regular eating schedule to help keep your sleep, mood and energy levels balanced
Try to maintain a proper sleep schedule, sticking to consistent wake-up/go to sleep times
Try to get 20 minutes of sunlight a day
Take advantage of the weather and find something you would normally do indoors, and take it outside
Take some time for YOURSELF by taking a calming walk, reading a book outside under a tree, enjoying the warmth of the sun and some refreshing, cool, soothing ice water… whatever soothes your soul
If you are not an outdoor person, then find an activity you like doing that makes you feel happy and relaxed, so you can slow down and de-stress
The bottom line: permit yourself to “feel good” this summer.
As we all know too well, the warm and bright summer months will not be with us forever— eventually, we will have to go back to the cold, dark winter months. We will return to the stress of school, the holidays, and the frigid outside chores that can sometimes overwhelm us. But now is not that time. Even if just for five minutes, take the time to do the things you enjoy. You deserve and need it.
Stefanie Peachey
BA, MSW, RSW, ACC.FM. Stefanie is a registered social worker/accredited family mediator, founder and director of Peachey Counselling and Family Support. This article originally appeared on the Peachy Therapeutic Services Mental Health Blog: It is shared here, That Summer Feeling: How Summer Can Impact Mental Health, with the kind permission of the team at Peachy Counselling. To learn more about their services, please visit: https://www.peacheycounselling.ca/contact-us
The Rise of Allergies and Stress
by Rebecca Helps, MTC
Increasingly, health professionals and counsellors are drawing attention to the psychological side effects of chronic allergies, namely, how they can subtly but powerfully elevate stress, erode patience, and even contribute to anxiety and depressive symptoms.
So, what’s the connection between allergies and stress? Let’s unpack it.
Pollen in the Air, Tension in the Body: Understanding the Allergy-Stress Cycle
For many, March through May marks the return of itchy throats, puffy eyes, and the ever-present chorus of sneezes on public transit. Tree pollen levels can skyrocket in early spring, especially from alder, birch, and maple trees.
But beyond the classic physical symptoms, seasonal allergies can take a toll on mental health. Here’s how:
Sleep Disruption: Congestion, post-nasal drip, and sneezing fits can interrupt sleep, leading to fatigue and irritability during the day.
Chronic Discomfort: Ongoing low-grade physical symptoms, like sinus pressure or itchy skin, can wear down mental resilience over time.
Decreased Productivity: Foggy thinking and poor sleep can impair focus at work or school, leading to frustration and self-criticism.
Social Withdrawal: Embarrassment about sneezing fits or the discomfort of being outdoors during high pollen days can reduce social engagement, leading to isolation.
In essence, the immune system’s overreaction to harmless pollen can snowball into a cascade of physical and psychological stressors. This phenomenon isn’t “all in your head”—it’s part of a mind-body loop that researchers and counsellors are learning to take more seriously.
What is “Allergy Anxiety”?
“Allergy anxiety” isn’t a clinical diagnosis, but it's a useful phrase to describe the emotional distress that often accompanies chronic allergic reactions. People with severe allergies may begin to dread spring, not because of the beauty outside, but because of how it makes them feel.
The Rise of Allergies and Stress
Some common experiences of allergy anxiety include:
Feeling trapped indoors during nice weather
Becoming hyperaware of symptoms, which can amplify them
Worrying that others might misinterpret sneezes or sniffles (especially in a post-COVID world)
Frustration with having “no control” over your body or symptoms
The sense of helplessness can build up, especially if allergy season drags on for weeks. And this emotional load doesn’t exist in a vacuum—it stacks on top of everyday life stressors, making people feel even more overwhelmed.
Counselling Tools for the Allergy-Stressed Mind
While allergy sufferers might be used to visiting their pharmacist or allergist each spring, fewer realize that mental health support can be just as valuable during peak pollen season. Counsellors trained in mind-body integration can offer strategies to help clients regulate their emotional responses to ongoing physical discomfort.
Here are a few ways therapy can help:
1. Normalizing the Frustration
Sometimes, the most validating experience is simply having someone acknowledge that what you’re going through is hard. A counsellor might help a client unpack how something as “minor” as seasonal allergies is impacting their sleep, mood, and relationships—and why it's okay to feel annoyed or discouraged.
Validation reduces the shame or guilt some people feel about “complaining” over health issues that others may see as trivial. Recognizing your struggle is a crucial step toward managing it with compassion.
2. Reframing the Narrative
Cognitive-behavioural therapy (CBT) techniques can help allergy-prone clients shift from helplessness to acceptance. Instead of thinking, “I can’t enjoy anything during spring,” clients learn to reframe their experience:
The Rise of Allergies and Stress
“This season is tough for me, but I can still find moments of peace and joy.” Even subtle mindset shifts can help reduce the emotional impact of chronic symptoms. For example, viewing allergy season as an annual “body challenge” rather than a personal failure can help ease the mental strain.
3. Grounding and Breathwork for Irritability
Many people don’t realize how much tension accumulates in the body when they’re dealing with sneezing, coughing, and fatigue. Gentle breathwork, progressive muscle relaxation, and grounding exercises can help soothe the nervous system, particularly when irritability spikes.
Some therapists offer nature-informed counselling or mindfulness walks, even during allergy season. With precautions like masks or avoiding high-pollen days, clients can still benefit from the calming presence of nature without exacerbating symptoms.
4.
Supporting Daily Routines
Fatigue from poor sleep and general discomfort can throw off self-care routines. Counsellors can help clients rebuild structure during allergy season, such as setting reminders for medications, building in rest time, or adjusting schedules to fit energy levels.
By collaborating on sustainable habits, therapists empower clients to feel more in control of their days, even when their sinuses are rebelling.
5. Addressing Underlying Anxiety
For some people, allergies aren’t the root problem, but rather a trigger for broader anxiety. Chronic discomfort can exacerbate existing mental health issues, especially in those with health anxiety or a history of panic attacks. Counselling can provide a safe space to untangle these patterns and develop healthier coping mechanisms.
Tips for Navigating Seasonal Allergies (Mind and Body Edition)
Managing seasonal allergies isn’t just about popping an antihistamine and hoping for the best— it’s about creating a holistic strategy that supports both your body and your mind. Here are some practical, research-informed tips that blend physical relief with psychological resilience:
1.
Track the Pollen Forecast Like the Weather
Tactic: Use apps like The Weather Network, AccuWeather, or Pollen Wise to check daily pollen counts. Plan outdoor activities—like dog walks, hikes, or gardening—during times when levels are lower, such as after a rainfall or later in the afternoon when pollen tends to settle. Bonus Tip: Subscribe to email alerts for high pollen days so you can adjust your day in advance.
The Rise of Allergies and Stress
2. Create a Personalized “Comfort Kit”
Tactic: Pack a small kit to keep in your bag or at your desk that includes:
Saline nasal spray (for quick decongestion)
Antihistamine eye drops
Cooling face mist or wipes
Lip balm and hand cream (dry air can irritate skin)
A few calming herbal teas (like chamomile or peppermint)
Noise-cancelling earbuds or a soothing music playlist to help calm your nervous system during flare-ups
Why it helps: Having tools within reach can reduce the sense of helplessness and help you regulate emotionally when symptoms spike in public or at work.
3. Refresh Your Indoor Air Space
Tactic: Invest in a HEPA air purifier—especially for your bedroom or home office. Change HVAC filters regularly and keep windows closed during high pollen days.
Extra Step: Wipe down surfaces and vacuum with a HEPA-filter vacuum once or twice a week. Shower and change clothes after coming in from outdoor activities to reduce the indoor pollen load.
Mental Health Bonus: Clean, fresh air reduces physical symptoms, and an organized environment can have a calming, anxiety-reducing effect.
4. Build an Allergy-Aware Wind-Down Routine
Tactic: Try this pre-bed ritual to calm both body and mind:
Take a warm shower to wash off pollen
Use a lavender-scented moisturizer or diffuser
Do a 5-minute guided body scan meditation using apps like Insight Timer, Calm, or Headspace
Drink warm, caffeine-free tea (like rooibos or lemon balm)
Read a physical book or journal instead of scrolling
Why it helps: Sleep is foundational to stress resilience. A mindful routine can quiet an overstimulated mind and give your immune system time to recover overnight.
5. Practice Strategic Breathwork When Irritability Strikes
Tactic: When sneezing or sinus pressure triggers frustration, pause and try box breathing:
Inhale for 4 seconds
Hold for 4 seconds
Exhale for 4 seconds
Hold again for 4 seconds
Repeat for 1–2 minutes.
Alternative: Try "bee breath" (Bhramari Pranayama), a gentle humming exhale that soothes the nervous system and can be surprisingly effective when you're feeling foggy or cranky.
Counsellor Tip: Breathwork gives your body a signal that it’s safe, even if it doesn’t feel that way in the moment.
The Rise of Allergies and Stress
7.
Reframe, Don’t Resist
6. Take a Nature Break—But with Boundaries
Tactic: Avoid high-pollen exposure by:
Going out right after the rain
Choosing coastal spots like Rocky Point Park over heavily forested trails
Wearing sunglasses and a wide-brimmed hat to shield eyes and hair
Wearing a mask on windy days or when pollen is high (bonus: it helps with social comfort around sneezing, too)
Mental Health Tip: Being in nature, even for a short walk or mindful pause, improves mood, lowers cortisol, and offers a valuable reset, even during allergy season.
Tactic: Instead of mentally fighting the season (“I hate spring; it ruins everything”), try this journaling prompt: What is still available to me, even if I’m feeling physically off? What can I say “yes” to that doesn’t require me to feel 100%?
Therapeutic Reframe: “I’m not broken. My body is responding to its environment—and I can support it with kindness, not frustration.”
8. Communicate Your Needs Clearly
Tactic: Let coworkers, roommates, or family know if you need adjustments during allergy flareups, such as:
Taking short outdoor breaks inside
Avoiding open windows at the office
Turning off scented diffusers that might irritate inflamed sinuses
Mental Health Bonus: Self-advocacy is empowering and prevents the internal buildup of resentment that can lead to stress outbursts.
9.
Limit Caffeine and Alcohol During Peak Allergy Days
Tactic: While that third coffee might sound like salvation after a sleepless night, caffeine can increase dehydration and irritability. Alcohol can also amplify inflammation and congestion.
Instead: Opt for hydrating drinks like coconut water, herbal iced teas, or cucumber-lemon water to support both your energy and your immune system.
The Rise of Allergies and Stress cont'd
10. Know When to Get Extra Support
Tactic: If you're feeling emotionally off, persistently anxious, unusually irritable, or down for weeks, consider connecting with a counsellor. Look for therapists who offer:
Mindfulness-based cognitive therapy (MBCT)
Somatic therapy or nervous system regulation
Virtual or outdoor walk-and-talk sessions
Remember: Mental health support isn't just for "big problems." Chronic, low-level stress (like dealing with allergies) is exactly the kind of thing therapy can help you handle more skillfully. These combined strategies can turn allergy season from something you merely endure into something you navigate with intention. Whether you're a seasoned sufferer or newly allergic, your spring experience doesn’t have to be all sneezes and sighs With the right tools and a little help from your therapist or support system—you can breathe a little easier, both physically and emotionally.
Final Thoughts:
It’s Not
Just Allergies—It’s How You Feel About Them
The rise of seasonal allergies isn’t just a medical issue—it’s a mental health moment, too. By understanding the link between physical discomfort and emotional strain, we can bring more empathy, care, and creativity into how we support ourselves and others during allergy season. And with the right tools—from medication to mindfulness—you might just reclaim some of the summer’s sweetness, one breath (and one sneeze) at a time.
“The Rise of Seasonal Allergies and Stress: Why Blooming Flowers Might Be Getting on Your Nerves” by Rebecca Helps was originally published on April 1, 2025, and is graciously reprinted here with the author’s permission.
Rebecca Helps
A Registered Therapeutic Counsellor (MTC).
She is a skilled counsellor who supports individuals and organizations in healing, growing, and becoming their best selves. With a strong belief that mental health should be prioritized where we spend most of our time—at work— Rebecca is passionate about integrating psychotherapy directly into workplace settings. She specializes in Family Counselling with Minors and Family Counselling with Adults, helping families navigate challenges and build healthier relationships.
To learn more, please visit www.helpscounselling.com or Email: info@helpscounselling.com
http://www.redmapletrials.com/ragweed
Daily News and how it impacts your Mental Health
by Leanne D. Rondeau, M.A., M.Ed.
What do we control? What do we not control? How can we be well-informed but not overexposed to the uncertainty we hear of in the news?
In a recent interview with Radio Canada, Dr. Christine Grou, President of the Order of Psychologists of Quebec, outlines some important ways to take care of our mental health, which has been challenged by the increasing political instability reported in the news since the beginning of this year.
First, she says, it is important to remind ourselves that anxiety is a normal phenomenon in uncertain times. Indeed, not to feel anxious at all in uncertain times would be worrisome. Many factors can affect our level of anxiety in relation to the current political instability, she states: if we tend to be anxious in general, our past experiences, or if we will be directly affected to lose our income due to the context. People living alone may also feel more vulnerable as they can have a weaker social support network.
The first suggestion she gives people is to establish certain limits or ‘life hygiene’ when it comes to how much news they consume: take a break from the news. When we are anxious, our brains lead us to be hypervigilant, she explains. We tend to think that we need to get more and more information, as if this will help us. But in the end, it does the opposite. When we overconsume news, it sends a message to our brains that there is nothing else out there: there is only uncertainty and unpredictability.
More than ever, she explains, it is important to go to good, reputable news sources once or twice a day, and do other things in between. The idea is to give yourself the message that life goes on and there are other things in life to enjoy: to get out and get some sun, listen to other things, socialize and have some fun. In any case, she states, more information will not give you more control over the situation. What we do have control over is how we are going to plan our day, our weekends, our vacations, etc. The goal is to be well-informed but not overexposed. A healthy dose of information about the current situation, she underlines, gives us control over the situation, but too much takes it away.
Daily News and how it impacts your Mental Health
She concludes by outlining how it is important for parents to manage their anxiety to be able to reassure their children who are hearing more and more about an “economic war” in school, and can often imagine a war with guns and violence. Instead of giving them a course in economics, she recommends that parents use the opportunity to ask their children what they understand about what is happening, and to reassure them by outlining what actions the family is taking, for example to buy locally, and to explain that all world leaders are concerned about these issues and are working on it.
You can listen to the original interview with Christine Grou on Radio-Canada here: Protéger sa santé mentale face à l’actualité, avec Christine Grou
This article originally appeared on March 13, 2025, and is graciously reprinted with permission from Dr. Leanne D. Rondeau.
Leanne D. Rondeau
A clinical psychologist and member of the Order of Psychologists of Quebec. Leanne received her M.A. in Religious Studies from the University of Manitoba in collaboration with the Instituto Bartolomè de Las Casas in Peru and her M.Ed. in Counselling Psychology from McGill University, and is a psychologist at Connecte Montreal Psychology Group. The team at Connecte loves writing about ways to boost our mental health and bring psychology into our everyday lives. To find out more about Leanne Rondeau and Connecte Psychology Group, please visit them at: https://connectepsychology.com/en/home/. For more helpful tips, check out Connecte’s blogs, podcast, follow @connectepsychology on Instagram or like us on Facebook
Seniors Health
In today's society, the health of senior citizens stands as a paramount concern, particularly within the framework of the Canadian healthcare system. This heightened focus is more than just a response to the growing number of seniors. Still, it is deeply rooted in recognizing their invaluable contribution to society and their unique challenges in their twilight years.
As people transition into their senior years, they bring unique health and social needs. This shift presents challenges and opportunities for the Canadian healthcare system and society.
In our Seniors Health section, we will provide information to help you in your journey, navigate daily life as a Senior, and provide resources to help you have the best quality of life.
Starting the Conversation: When to Talk to a Parent About Moving into a Retirement Home
by Peg Bocci
There is never a perfect moment to start a conversation about transitioning to a retirement home. For many adult children, discussing retirement living with their parents can be one of the most complex and emotional conversations they will have. It's more than when and where; it's about the love, loss, change, and the need for more care.
But with some awareness, empathy, and planning, you can approach the conversation in a way that supports both you and your parent through what might be a significant life transition.
Signs It Might Be Time to Talk
It’s easy to second-guess yourself if you are overreacting, or is there a cause for concern?
Here are a few signs that it might be a good time to start the conversation:
1 Health changes: you notice your parent is slowing down, struggling with mobility, forgetting to take medications, or missing important appointments.
2 Safety concerns: There have been falls inside or outside of the house, kitchen mishaps such as leaving the stove on or burning something in the microwave, or they are finding it harder to manage the stairs or climb into the bathtub.
3.Social isolation: They don't go out anymore, decline invitations to events, seem lonely or withdrawn.
4.Home Maintenance: Their home is messier than usual, and basic tasks like grocery shopping or laundry seem overwhelming.
5.Caregiver burnout: If you or another family member is providing a lot of support, you may feel overwhelmed. It's a sign that the current set-up may not be sustainable.
If you're starting to notice one or more of these signs, it's worth beginning a conversation about them. This doesn't mean you have to make a decision today, but it opens the door for future discussions.
Starting the Conversation: When to Talk to a Parent About Moving into a Retirement Home cont'd
How to Start the Conversation
Why It’s Better to Talk Early
Many people wait for a crisis before talking about moving, like after a hospital stay, a serious fall, or the passing of a spouse. Unfortunately, those moments are already stressful, and decisions often need to be made quickly.
Instead, try to talk early when your parents are still relatively independent and can be an active part of the decision-making process. It might feel uncomfortable at first, but many families find that these early, honest conversations take a huge weight off everyone’s shoulders.
No one likes feeling like they’re being pushed into something. That’s why how you start the conversation is just as important as when you do it.
Here are a few tips to get started:
1.Pick a low-stress moment: Avoid bringing it up in the middle of a family gathering or during a medical emergency. Choose a quiet time when you both have space to talk openly.
2.Be curious: Start with open-ended questions. “How are things feeling at home lately?” or “Do you ever think about where you’d want to live if the house became too much?”
3 Use “I” statements: Instead of saying, “You can’t live here anymore,” try, “I’ve been worried about you living alone, and I want to make sure you’re safe and happy.”
4 Focus on the positives: Retirement homes today offer so much more than people realize: meals, social events, outings, support when needed, and a sense of community.
5 Make it a process: This isn’t a one-time conversation. It’s the start of an ongoing dialogue. That gives your parents time to reflect, ask questions, and feel like they’re in control.
Expect Emotions
These conversations can evoke strong emotions for both of you. Your parent may feel fear, grief, or even shame. You may feel guilt or sadness. That’s all normal.
What helps most is listening. Even if your parent pushes back, listen carefully to what’s underneath. Are they afraid of losing their independence? Worried about finances?
Ashamed to ask for help? These are valid concerns, and addressing them together, with respect and love, can ease the path forward.
Starting the Conversation: When to Talk to a Parent About Moving into a Retirement Home cont'd
Opening the Door to New Possibilities
Once your parent is open to the idea or curious, it can be helpful to explore a few options together. Visit a couple of retirement residences, attend an open house, or even have lunch at one with them. This helps break down old stereotypes and make the unknown feel more familiar. You might also want to talk about: What kind of support they’d want (independent living, assisted living, memory care, etc.)
Budget and financial options
Location and proximity to family or friends
Timing. Do they want to plan for next year, or are they ready sooner?
Involving your parent in these decisions helps them feel empowered and more likely to embrace the change.
In the end, it’s just about being there for each other. There’s no perfect script, no ideal timing, and no one-size-fitsall approach to having this kind of conversation. Every family is unique. But starting with empathy, honesty, and patience is always a good place to begin. Keep in mind that you’re not just helping your parent move houses. You’re helping them step into a new chapter that’s often safer, more supported, and even more fulfilling. That’s a conversation worth having. If you're feeling unsure about where to start, whether it's understanding the options, managing the downsizing process, or coping with the emotional side of the move, Eldercare Planners are available to guide you every step of the way.
Peg Bocci
Founder & CEO of Silver Lining Senior Advisors. She has worked in the senior living industry for over 20 years and has acquired a wealth of knowledge of this dynamic industry and the people living and working in it. For more information, please visit www.silverliningsenioradvisors.com
Peg@silverliningsenioradvisors.com or call 647-771-8276
Joyful Aging
by Loretta Karikari, MSW, RSW
Aging brings with it a rich tapestry of experience, perspective, and resilience. From adjusting to new living arrangements and navigating health changes to reflecting on legacy and the unknowns ahead, aging is a complex journey. But amid its challenges, the later years also present new freedoms to explore passions, deepen relationships, and reimagine what joy can look like.
Joyful aging begins with rejecting the myth that the best years are behind us. What if they are still unfolding, just in different, more meaningful ways?
By 2050, there will be more than 2 billion people aged 60 and above worldwide. Are you one of them? How do you view aging, especially in a culture that often glorifies wrinkle-free, sporty, ever-fulfilling seniors? It can be hard to reconcile those images with the very real experiences of chronic illness, reduced mobility, or social isolation. But here's the truth: optimal aging isn't about looking young; it's about living meaningfully.
What role do joy, pleasure, and purpose play in helping us adapt to the physical, social, and emotional changes associated with aging? The answer may surprise you.
What the Research Says
A recent review of 11 studies involving nearly 1,500 adults aged 65 and older closely examined the concept of joy in later life. Conducted across care homes, community settings, and retirement facilities, the studies revealed that although older adults deeply value joy, it remains surprisingly underexplored in research. Still, two consistent themes emerged as key sources of joy: 1. Social connection; 2. Meaningful activity
The Power of Social Connection
Talking, sharing, laughing, and connecting with others, whether friends, family, or caregiving staff, contributes to a deep sense of belonging. These connections ground us in community, help us feel seen and valued, and allow us to experience joy in both big and small ways.
Reminiscing with loved ones can also bring joy. Revisiting memories and accomplishments can rekindle pride, gratitude, and a renewed sense of purpose. Social connection isn't just emotionally beneficial; it has also been linked to better physical health and increased longevity.
The Joy of Meaningful Activity
Many older adults find joy in hobbies and pastimes like gardening, reading, painting, dancing, or listening to music. Even if physical limitations make some activities harder, adaptations are always possible. Although you may no longer garden actively, time spent in nature can still offer peace and healing. If you once played an instrument, simply listening to music can lift your spirits and bring back cherished memories.
Spirituality and faith also play a central role for many in providing meaning, comfort, and joy. Likewise, giving back—whether through volunteering or mentoring can offer deep satisfaction and a continued sense of contribution.
Five Shifts Toward Joyful Aging
We often fear that joy fades with age, but the opposite can be true. Aging gives us the chance to master the skill of happiness. Here are five mindset shifts that support joyful aging:
1. Instead of judging yourself, treat yourself with love
We're taught that happiness comes from perfection. But self-criticism fuels suffering. Self-compassion is linked to improved mental health and even longevity.
2. Instead of striving to achieve, focus on contributing
Accomplishments can be fleeting, but contributing to others creates a lasting sense of purpose. Whether you're supporting family, mentoring others, or volunteering, your efforts have a ripple effect. Purpose has been linked to better brain health and emotional well-being.
3. Instead of worrying about weaknesses, lean into your strengths
You carry three powerful gifts:
• Humanity – your compassion, patience, and humour
• Wisdom – the life lessons from your unique journey
• Talents – your skills and passions
Ask yourself how these can be reimagined and shared in new ways at this stage of life.
4. Instead of going it alone, seek connection
Relationships are the most significant predictor of happiness. Isolation can be harmful, but spending time with loved ones and building new relationships supports both emotional and physical well-being.
5. Instead of standing still, keep growing
Personal growth doesn't end with age. Each year brings a new opportunity to learn and expand. Take up a hobby, revisit a forgotten interest, or challenge yourself to try something different. It's never too late to grow.
Joyful Aging Is a Collective Responsibility
While individual mindset matters, society plays a role too. Supporting joyful aging means advocating for systems and communities that honour and uplift older adults. This includes:
• Fostering intergenerational connections
• Expanding access to mental health and wellness services
Older adults are not burdens. They are wisdom holders, culture bearers, and vital contributors to the fabric of society.
Final Thoughts: Aging as a Sacred Journey
Joyful aging is not about denying pain or pretending everything is perfect. It's about walking through the inevitable challenges of life with grace, curiosity, and courage. It's about rewriting the story of aging, not as a slow winding down but as a deepening. A chance to live more honestly, love more freely, and be fully yourself.
You are never too old to grow. You are never too late to matter.
In this sacred chapter of life, may you find the freedom to live joyfully, authentically, resiliently, and whole.
Loretta Karikari
A registered social worker and psychotherapist who works with individuals and families to support a wide range of mental health issues and life transitions. She is especially passionate about caregiver mental well-being and provides therapeutic support, workshops, and educational resources that center compassion and resilience. Through her practice, Loretta creates space where people feel truly seen and heard, navigating life's challenges with greater clarity, healing, and hope. For more information, please visit https://mindcarewellness.janeapp.com or contact info@themindcarewellness.com
Staying physically active is crucial for seniors to maintain their overall health and quality of life. Engaging in regular fitness activities helps improve strength, flexibility, balance, and cardiovascular health, reducing the risk of injury and chronic diseases. Fortunately, many free workout resources are available, particularly online. One such valuable resource to try is the
https://yes2next.com/
It is a mother-and-daughter dynamic duo showcasing a variety of exercises specifically tailored for those 50 and beyond and for individuals with limited mobility. Their YouTube channel offers you more than 200 free fitness videos.
Whether it's gentle stretches, chair exercises, or low-impact cardio routines, yes2next provides a convenient and effective way for seniors and everyone to stay active and maintain their wellbeing.
Pediatric Health
Welcome to the Pediatric Health section of E3 Advocacy Digital Magazine, a dedicated space where we embrace the journey toward pediatric wellness with open arms and open hearts.
We believe that an informed and engaged parent is an empowered one. Through enlightening articles, expert insights, and inspiring stories, we aim to equip our readers with the tools and knowledge necessary to navigate the complex pediatric health care landscape.
Join us as we explore how patient advocacy, active engagement and comprehensive education can transform the pediatric health care experience, turning obstacles into opportunities for growth and healing.
Genetic Testing and Screening in Newborns: Implications for Treatment in Canada
by Cheryl Petruk, MBA, DBA Student
Genetic testing and newborn screening have transformed the landscape of pediatric healthcare by enabling early detection and intervention for a growing number of hereditary and metabolic conditions. In Canada, each province and territory implements its own newborn screening program using a heel-prick blood sample collected shortly after birth. While these public health programs have significantly reduced morbidity and mortality, there are variations in which disorders are screened across jurisdictions. The evolution of genomic sequencing technologies, coupled with the emergence of targeted therapies, highlights the urgent need for a pan-Canadian strategy to standardize and expand screening efforts.
History and Rationale of Newborn Genetic Screening
Early Milestones
Genetic newborn screening traces back to the 1960s when Robert Guthrie introduced bloodspot testing for phenylketonuria (PKU) using a simple bacterial inhibition assay. This screening has since become a global public health success.
Expanding the Testing Panel
With advances in tandem mass spectrometry and molecular diagnostics, screening panels have expanded to include metabolic disorders (e.g., MCAD deficiency), endocrine defects (e.g., congenital hypothyroidism), hemoglobinopathies (e.g., sickle-cell disease), and cystic fibrosis. Early detection allows for prompt lifetime-altering treatment interventions, including enzyme replacement, dietary modification, and prophylactic antibiotics.
Public Health Significance
Newborn screening is widely recognized as one of the greatest achievements in public health. Identifying conditions before symptoms fully emerge can prevent irreversible harm, such as intellectual disability, life-threatening metabolic crises, or organ damage.
Provincial Variability
and the Case for PanCanadian Coordination
The Patchwork of Programs
Canada's system is provincially administered: the number of screened conditions ranges from as few as three to over twenty-eight. This inconsistency creates unintended inequities, as children in some provinces may miss out on lifesaving screening.
National Recommendations and Strategic Gaps
To address disparities, the Canadian Druggies for Rare Diseases Initiative recently released Pan-Canadian newborn screening guidance, advocating consistent criteria and an advisory mechanism for adding new disorders.
Sickle-Cell Disease (SCD)
SCD screening is included in all Canadian newborn programs that use isoelectric focusing or chromatography to identify abnormal hemoglobin. Early intervention with prophylactic penicillin and parent education dramatically reduces mortality and hospitalization.
Spinal Muscular Atrophy (SMA)
Recent systematic reviews support adding SMA to newborn panels as presymptomatic treatment with gene therapies (e.g., nusinersen) significantly reduces disability. Some Canadian provinces have piloted or integrated SMA screening.
Key Disorders and Treatment Pathways
Phenylketonuria (PKU)
PKU was the first screened disorder in Canada and remains a prototype for early treatment— dietary phenylalanine restriction, initiated within days of life, averts severe neurological impairment.
Medium Chain Acyl-CoA Dehydrogenase
Deficiency (MCAD)
MCAD screening began with mass spectrometry. A Dutch study reported a 74% reduction in metabolic crises and death in screened infants. Canadian jurisdictions adopt similar findings into routine panels.
Congenital Hypothyroidism (CH)
Early detection through TSH testing prevents profound intellectual disability by enabling prompt thyroid hormone replacement, a standard inclusion in all screening programs.
Cystic Fibrosis (CF)
CF screening by measuring immunoreactive trypsinogen and CFTR mutation panels has been implemented in some provinces (e.g., Alberta since 2007), though not nationally. Early detection improves nutritional status and lung function, and it opens timely access to CFTR-modulator therapies.
Genomic Sequencing: Prospects and Ethical Balance
Whole-Genome/Newborn Genomics
Advances in genomic sequencing promise expanded diagnostic scope, including rare, treatable conditions not detectable via traditional panels. However, issues of informed consent, incidental findings, and ethical responsibility must be addressed. Addressing Consent and the ‘Right to Know’ Canadian recommendations are shifting toward “appropriate consent” models that balance public health benefits and respect for family preferences. The ethical framework recognizes both the child’s right to future autonomy and the societal mandate for early treatment.
Emerging Treatments and Timeliness
Genetic Testing and Screening in Newborns: Implications for Treatment in Canada cont'd A Path Toward a National Newborn Screening Strategy
With dozens of cell and gene therapies in clinical pipelines, the ability to screen early is crucial. Regulatory and funding processes must evolve accordingly.
Genetic Counselling and Family Impact
Genetic counselling is crucial in interpreting results, informing parents, and facilitating follow-up testing. Counsellors address psychological, ethical, and reproductive issues and ensure families receive culturally appropriate support.
Genomic results can cause anxiety, especially with false positives or uncertain variants.
Genetic counsellors mitigate distress and support informed decision-making.
Challenges to Equitable Implementation
Resource disparities across provinces impact timely testing, follow-up, and treatment.
Data infrastructure is needed for national monitoring, quality assurance, and outcome measurement.
Cost and funding models must adapt to the expense of genomic technologies and therapies.
Public education is essential to build trust, understanding, and participation in screening programs.
Key recommendations from recent PanCanadian guidance include:
1.Establish a National Newborn Screening Advisory Committee under CPHLN to standardize priorities and review new conditions.
2.Develop transparent criteria using principles such as those by Dobrow et al., following Wilson–Jungner screening frameworks.
3 Implement informed consent models and establish ethical guidelines.
4.Expand coverage for disorders matched with funded, effective treatment; integrate genomic-based methods with oversight.
5.Build data systems across jurisdictions to evaluate outcomes, equity, and costeffectiveness.
Newborn genetic screening represents a cornerstone of modern pediatrics, enabling timely interventions that can transform lifelong health outcomes. In Canada, where provincial programs offer varied levels of coverage, a cohesive strategy across levels of government is essential. As genomic technologies and therapies evolve, Canada has a unique opportunity to set a global standard, ensuring every child receives the “right to be well” from the very moment of birth.
Childhood Dementia: A New Approach to 100+ Rare Genetic Neurodegenerative Conditions
by Isobel Lindley, Childhood Dementia Initiative
Dementia is commonly associated with aging and diseases such as Alzheimer’s, but it’s far less known that dementia can also affect children. Childhood dementia is not a single disease but rather a collective of over 100 rare genetic disorders that damage the brain and nervous system. These disorders are progressive and rob children of memory, language, motor skills, and independence, ultimately leading to premature death. An estimated 1 in every 2,900 babies is born with a childhood dementia condition.
As each individual disorder is rare, these conditions historically have received little attention or research, and the care and support needs of this cohort have remained largely unrecognized and without meaningful response.
In 2020, the Childhood Dementia Initiative was launched to drive collective action for all the disorders that fall under the childhood dementia umbrella. This approach is similar to that taken for cancers: bringing the many different cancers together resulted in significant awareness and improvements in survivorship and quality of life.
With attention on this cohort, emerging research is now revealing the significant psychosocial toll on families including isolation, pervasive and ongoing grief, anxiety, and financial impacts. Families report struggling to access adequate care and support while managing their children’s increasing and complex care needs. Delays in diagnosis, difficulties finding knowledgeable healthcare professionals, having to become the experts on their child’s condition, managing a complex web of specialists and appointments are among the identified challenges.
This new body of evidence is being used to create change. In Australia, the Federal government has partnered with Childhood Dementia Initiative to design better care and support for children and families. Additionally, researchers, families and health professionals have come together to advocate for change and work together. As action and awareness grows globally, progress for this cohort can finally accelerate and deliver the care, support, treatments and cures children with dementia urgently need.
Childhood Dementia: A New Approach to 100+ Rare Genetic Neurodegenerative Conditions cont'd
What is childhood dementia?
Childhood dementia results from progressive brain damage and is caused by over 100 rare genetic disorders.
The most common types of childhood dementia include Rett syndrome, some mitochondrial disorders, nonketotic hyperglycinemia, vanishing white matter disease, Sanfilippo syndrome, Batten disease, MECP2 duplication syndrome, spastic paraplegia type 11 and juvenile Huntingtons disease.
First signs and symptoms
Altogether, there are over 100 different childhood dementia disorders. They are all progressive, fatal genetic conditions.
Broadly, the different groups or types of childhood dementia disorders include:
Inborn errors of metabolism
Lysosomal disorders
Mitochondrial disorders
Mucopolysaccharidoses
Peroxisomal disease
Neurodegeneration with brain iron accumulation (NBIA)
Leukodystrophy
The first signs of childhood dementia are varied and can include seizures, developmental delays and developmental regression (loss of skills already learned). Childhood dementia symptoms start, on average, at 2.5 years of age. There is, however, a wide spectrum in ages for symptomonset depending on the type of childhood dementia. For some children, symptoms can appear when they're babies and progress quickly. While for others, symptoms may not appear until later in childhood or, rarely, during their teens.
Other early signs can include hearing and vision loss, speech delay, problems feeding, trouble controlling movement and behavioural problems. It’s common for children to remain undiagnosed for significant periods, and sometimes years, and to be misdiagnosed with autism, developmental delay, or attention deficit hyperactivity disorder (ADHD).
Childhood Dementia: A New Approach to 100+ Rare Genetic Neurodegenerative Conditions cont'd
In addition to these symptoms, children can also:
Suffer from seizures
Lose their vision and hearing
Lose their ability to move entirely
Have problems with their bones, joints, or their cardiovascular, respiratory, or digestive systems
New Resources: The Childhood Dementia Guide Supporting and Empowering Families
The Childhood Dementia Guide for Families is a collection of information resources for families impacted by childhood dementia. It was developed by the Childhood Dementia Initiative in collaboration with families. The Guide was designed to help families:
Understand and talk about childhood dementia
Manage healthcare appointments and enable better experiences with healthcare providers
Confidently stand up for their children's needs
Feel less isolated
The first phase of the Childhood Dementia Guide for Families is made up of two components: Information and guidance for families
Finding Hope: A letter from one parent to another. A message of support from a parent who shares personal insights and offers encouragement.
Understanding Your Child's Diagnosis: A guide for parents of children with childhood dementia conditions. A clear, straightforward explanation of childhood dementia to help parents make sense of their child's diagnosis.
Supporting a Family Affected by Childhood Dementia: A guide for grandparents, family members & close friends. A guide for grandparents, family members, and friends that explains childhood dementia in simple terms and provides practical ways to offer family support.
Childhood Dementia: A New Approach to 100+ Rare Genetic Neurodegenerative Conditions cont'd
Practical Healthcare Resources
Healthcare Rights Guide: For parents of children with a childhood dementia condition. This guide suggests practical ways to talk with healthcare providers and stand up for a child's needs. It includes practical tips about collecting important information, preparing for healthcare appointments, and question prompts.
About My Child: A one-page summary for new doctors. A summary form to share with a new doctor, giving them all the important details they need to know about a child.
Doctor Appointment Checklist: A comprehensive form to help parents prepare for, manage, and follow up on healthcare appointments. This resource captures essential information and helps parents ask important questions.
Easy Read Doctor Appointment Form: A simplified version of the Doctor Appointment Checklist with straightforward language and clear formatting to help track medical visits.
“This toolkit represents an important step toward our goal of improving outcomes for children with childhood dementia and supporting and empowering the families who care for them," says Gail Hilton, Head of Programs at Childhood Dementia Initiative.
“While Childhood Dementia Initiative is driving essential system improvements to reduce the burden on parents to advocate for their children, we’re aware that parents urgently need information and support now. Parents who have gained expertise through their lived experience have shared their learnings through this toolkit, which will help guide others as they navigate a childhood dementia diagnosis and their child’s ongoing care. Utilizing parents’ lived experiences is an effective and powerful way that we can give parents support now,” adds Hilton. For families: Information and a growing suite of support resources can be found at: https://www.childhooddementia.org/families-and-carers
Information for health professionals, including the Childhood Dementia Community of Practice, can be found at: https://www.childhooddementia.org/health-professionals
If you are a researcher focused on childhood dementia or with an interest in childhood dementia, connect with the Childhood Dementia Initiative here: https://www.childhooddementia.org/for-researchers
To raise awareness, join the colourful global awareness push on Childhood Dementia Day 17 September https://www.childhooddementia.org/faceit
Childhood Dementia: A New Approach to 100+ Rare Genetic Neurodegenerative Conditions cont'd
Support Systems in Canada
While the rarity of childhood dementia means there are limited disease-specific services, several organizations and community supports exist to assist families.
1. Rare Disease Foundations and Advocacy Groups
Rare Diseases Canada (https://raredisorders.ca)
Offers support for families living with rare disorders, including guidance, resources, and advocacy.
Canadian Organization for Rare Disorders (CORD)
Advocates for policy change, research funding, and access to orphan drugs and clinical trials. Childhood Dementia Initiative (CDI) (Australia-based but global in scope –https://www.childhooddementia.org)
Raises awareness and offers downloadable family support guides, even for Canadian audiences.
2. Condition-Specific Organizations
Sanfilippo Children’s Foundation Canada (https://www.alifeforellie.ca)
Provides education, family networking, and research support.
CLIMB Foundation Canada (https://www.climbcanada.org)
Supports families with Batten disease and similar lysosomal storage disorders. The Isaac Foundation (https://www.theisaacfoundation.com)
Supports families with rare lysosomal diseases like MPS.
Rett Syndrome Association of Canada (https://www.rett.ca)
Offers family resources, community networking, and advocacy for affected girls and their families.
3. Community-Based Supports
Children’s Treatment Centres (Ontario and across provinces)
Provide developmental therapy, speech therapy, occupational therapy, and physical therapy for medically complex children.
Canuck Place Children’s Hospice (BC) & Roger Neilson House (Ottawa)
Pediatric palliative care centers that support children with life-limiting illnesses.
Respite Services and Home and Community Care Support Services (by province)
Offer respite care, home nursing, and case coordination for medically fragile children.
Childhood Dementia Initiative
An organization that transforms the response to childhood dementia. They drive change within systems responsible for the treatment and care of children. They bring all of the conditions that cause childhood dementia together under one umbrella.
https://www.childhooddementia.org/
Global Partners
The My Blood My Health program is dedicated to empowering individuals affected by Hematological issues by providing trusted education, advocacy, and support. Through patientcentered resources and expert collaborations, we strive to enhance awareness and improve access to critical information for those navigating their blood health journey. Stay tuned for the next edition of the My Blood My Health digital magazine, coming in March, featuring insightful articles, patient stories, and the latest updates in hematology
Heal Canada and Pat ADV Hub in the USA have embarked on a collaborative journey, aiming to revolutionize the realm of patient advocacy across North America. This pioneering partnership brings together two influential organizations from neighbouring countries, combining their extensive expertise and resources.
The objective is to expand and enhance the access to critical information for patient advocates, ensuring that individuals across the continent receive the best possible support and guidance in their healthcare journeys.
By bridging the gap between Canadian and American healthcare advocacy, this alliance promises to foster a more informed, empowered, and connected community of patient advocates, significantly contributing to the improvement of healthcare experiences for countless individuals.
patadvhub@gmail.com www.patadvhub.org
Advocacy Spotlight
The "Advocacy Spotlight" section of E3 Advocacy Digital Magazine is a dynamic platform dedicated to shining a light on patient advocacy groups, both new and established. This unique feature aims to introduce these vital organizations to a broader audience, highlighting their missions, achievements, and the critical support they offer patients and their families.
Each edition of this segment meticulously selects a different group, delving into their specific focus areas, ranging from rare diseases to everyday health challenges. Heal Canada amplifies these groups’ voices and fosters a deeper understanding and connection within the broader healthcare community by showcasing their stories, initiatives, and community resources.
This section is more than just an informational piece; it celebrates these advocacy groups’ tireless efforts and significant impact and empowers readers by connecting them with valuable resources and support networks.
https://lupusontario.org/
Lupus Ontario Advocating for Government-Funded Vaccines for the Immunocompromised Community
by Lupus Ontario
Lupus Ontario is currently advocating with the Ontario Government to provide public funding for critical vaccines to all immunosuppressed patients. We urge all Canadians impacted by this gap in care to meet with their member of Provincial Parliament to ask for their support in providing critical vaccines to all immunosuppressed Canadians.
Ontarians living with lupus and other immunocompromising conditions, including rheumatoid arthritis, Sjögren’s Syndrome, arteritis, and polymyositis, face a high risk of severe illness, complications, and hospitalizations from vaccine-preventable infections such as:
Respiratory Syncytial Virus (RSV) – a major cause of severe respiratory complications, especially for moderately or severely immunocompromised persons;
Shingles – a painful and often debilitating condition that occurs most frequently among older adults and immunocompromised persons (affecting 30.5% of lupus patients, as shown in a study by the Toronto Lupus Clinic); Human Papillomavirus (HPV) – the virus puts immunocompromised persons at a higher risk for recurring infections, various cancers, and non-cancerous lesions.
Despite heightened vulnerability to these infections, many immunocompromised persons, including Lupus patients, do not qualify for Ontario’s publicly funded immunizations unless they meet other, narrow eligibility criteria. Lupus and other immunosuppressed patients are often advised by their physicians to receive essential immunizations against RSV, shingles, and HPV, but the financial burden of paying out-of-pocket is upwards of $1,245 for the three vaccines. This cost is often out of reach for people with chronic diseases who may have limited financial resources, or their private insurance plan may not cover the cost of vaccines. The eligibility for these vaccines varies across Canada. Current eligibility gaps in Ontario include the following:
RSV prevention program: RSV is a major cause of respiratory tract illness, particularly among infants, young children, older adults, and those with moderate to severe immunodeficiency.1 Infants up to 24 months of age who have severe immunodeficiency and some adults 60 years and older who have immunocompromising conditions (e.g. recipients of solid or hematopoietic stem cell transplants) are eligible for publicly funded RSV vaccination (Beyfortus®, Abrysvo®, or Arexvy®) in Ontario. However, lupus patients, many of whom are immunocompromised and susceptible to respiratory complications, are between the ages of 2 and 60, making them ineligible for the publicly funded vaccine.
Lupus Ontario Advocating for Government-Funded Vaccines for the Immunocompromised Community cont'd
Shingles immunization program: Shingles occurs most frequently among older adults and immunocompromised persons, and immunocompromised persons may be more likely to experience recurrence complications. For example, from May 2016 to November 2018, the Toronto Lupus Clinic conducted a study exploring prevalence, incidence and risk factors for shingles in lupus patients from May 2016 to November 2018. 30.5% of the 491 study participants experienced shingles at some point, either before or during the study. Residents aged 65 to 70 are eligible for the publicly funded shingles vaccine (Shingrix®) in Ontario. However, individuals who are immunocompromised, either due to underlying conditions or immunosuppressive agents, are ineligible for the publicly funded vaccine.
HPV immunization program: It is estimated that 75% of Canadians will have an HPV infection at some point in their lifetime if they are not immunized. Individuals with certain immunocompromising conditions are at high risk for persistent HPV infections and associated diseases, which include various cancers and non-cancerous lesions. Students in grades 7 to 12 and males up to 26 years of age who self-identify as having sex with men are eligible for publicly funded HPV vaccination (GARDASIL® 9) in Ontario. However, immunocompromised individuals who fall outside of these eligibility criteria are not eligible for the publicly funded vaccine.
Lupus Ontario
A non-profit organization dedicated to providing vital support, education, awareness, advocacy and research through fundraising efforts of our staff and volunteer community to help those with lupus live longer, healthier and productive lives. Our Vision is Life Without Lupus. https://lupusontario.org/
Introducing the Health Advisory Network: ShareYour Story, Shape the Future
by Kim Hanson
Living with diabetes has taught me the importance of sharing my story—whether it’s with researchers developing studies, companies improving medications and devices, or government agencies striving to deliver better services. But over the years, I’ve often wondered: How do my experiences compare to those of someone facing cancer or cardiovascular disease? Could we uncover valuable solutions by looking at what connects us, alongside what makes our challenges unique?
At HealthPartners, these questions inspired something big. For over 35 years, we’ve brought together workplaces, health charities, and communities they serve to improve the lives of people affected by illness. Now, we’re taking the next step.
We’re proud to introduce the Health Advisory Network (HAN)—a national platform where people like you can share your experiences, highlight challenges, and collaborate on solutions to improve healthcare across Canada.
Here’s how it works:
Share Your Voice: Participate in quick online surveys and consultations about your experiences as a patient or caregiver.
Get Paid: Your time and insights are valuable, and we make sure they’re compensated. Drive Change: Help tackle challenges in workplaces, healthcare systems, and communities. Why now? Because the numbers speak for themselves:
45% of Canadians live with at least one major chronic condition. 2.5 million Canadians report unmet healthcare needs
1 in 2 Canadians will act as caregivers during their lifetime
The Health Advisory Network creates a unified space for people affected by health conditions to connect, share, and make a meaningful impact It’s not here to replace the incredible work of health charities or patient-oriented research groups—it’s here to amplify it. Together, we can uncover shared challenges and opportunities to build a stronger, more inclusive healthcare system.
Join the Health Advisory Network today and help shape the future of healthcare in Canada.
➡ Sign up and start making an impact
Health Advisory Network
Providing Accommodation Access to Healthcare For Every Canadian: StayWell Suites Charity
Imagine being forced to choose between life-saving medical care and the financial burden of relocatingtoTorontotoaccessit.Thisistherealityformanypatients,alongsidetheircaregivers and family who must travel far from home to receive critical treatment. The added challenge of securing safe, affordable housing in an unfamiliar city often makes an already difficult journey evenharder.Thisfinancialburdenmayforcepatientstoeitherdelayorforgonecessarymedical care.
ThisiswhereStayWellSuitesCharitystepsin.
StayWell provides affordable accommodations to Canadians who must relocate for medical treatment. Through partnerships with major hotel chains and professional furnished apartment providers, we offer subsidized patient rates, alleviating the financial burden and ensuring patients can stay close to hospitals, alongside their caregivers and family, while receiving treatment
The inspiration for StayWell Suites Charity came from the personal experience of Tina Proulx, a patient from Ottawa, who faced a similar challenge in 2015. Diagnosed with a rare, lifethreateningdisease,TinaneededadoublelungtransplantatTorontoGeneralHospital,over400 kilometres from her home in Ottawa. In Toronto, the areas surrounding the hospitals are amongst the most expensive in the city. Tina and her husband Joel decided to make the move and had to take leaves of absence from work – they found themselves living in one of the most expensivecitiesinthecountrywithoutanyincome.
Matt Regush, a partner at Sky View Suites, learned of Tina's relocation challenges in the fall of 2015, when her family inquired about furnished accommodations and instantly provided them with a fully furnished unit at a reduced cost. This encounter led to the creation of StayWell Suites Charity. “If you cannot afford to live in Toronto and you’re making the choice not to accept treatment, then you are basically making the choice to die” says Tina, reflecting on her experience In December 2015, Tina received her transplant and made a full recovery, inspiring StayWell’smissiontohelpotherpatientsfacingthesamechallenges
From our start in 2018, providing three patients of the Princess Margaret Cancer Centre, including their families and caregivers, with 135 nights, we have grown significantly. By the end of 2024, we will have supported over 5,500 patients with over 90,000 room nights across all major hospitals in Toronto. Patient stays range from a few days to over a year. Earlier this year, we concluded an agreement with the SickKids Foundation to provide $250,000 in accommodationsupportoverthenextfiveyears.
Providing Accommodation Access to Healthcare For Every Canadian: StayWell Suites Charity cont'd
Looking ahead, StayWell will expand to other cities across Canada in 2025, continuing to rely on the support of dono s and partners to fill the gap between accommodation costs and what patients can afford. StayWell Suites Charity is committed to providing safe, affordable accommodations to patients, along with their caregivers and family, during their medical journey. Your support can make a life-changing difference for families like Tina’s, ensuring that no patient has to choose between their health and affordable accommodations.
Patients/caregivers can go to our website staywell.ca and select the Book Now link
Patient Journey's
The "Patient’s Journey" section of E3 Advocacy Digital Magazine is close to our hearts. This magazine is dedicated to patients and caregivers. We are proud to offer a platform to our community so that we can share, learn, and grow together. Here, patients can share their experiences and empower readers by connecting them with our Heal Canada community. By doing so, we can understand that whatever the situation we face, we are not alone! United, we stand in Advocacy!
When Systems Fall Short, Patients Scaffold: How AI Helped Me Navigate Cancer
by Alvina Nadeem, ing., PPCC, ProSci CP
Hi, I’m Alvina. I’m a mechanical engineer by training, a change management consultant by profession, a certified coach, a systems thinker, and a mother of two. I help people and organizations redesign how they work. But nothing prepared me for the redesign I’d be forced to make in my own life.
In March 2023, I was diagnosed with stage 1 high-grade serous ovarian cancer. I didn’t see it coming. But strangely, I was more prepared than most, not because of a checklist or a spreadsheet, but because of an unexpected partner: ChatGPT.
This isn’t a story about tech. It’s a story about survival in the cracks of a system. It’s about what happens when healthcare can’t keep pace with complexity, and the patient has to fill the gap. It’s about how AI became a cognitive scaffold when the map ran out. Because when systems fall short, patients improvise. And we do it because we’re hardwired to survive. But what scaffolds us when we’re the ones holding everything together?
Before the Diagnosis: Listening, Doubting,
Searching
It all started in February of 2023. First came fatigue. Then a sudden drop in appetite. Subtle, almost ignorable changes, but something felt off.
I didn’t rush to the doctor. I didn’t panic. But I did start taking mental notes, tiny stickies in my brain that said, “This isn’t normal for me.” That “for me” part is crucial. Because it wasn’t just about recognizing symptoms, it was about knowing what feeling good in my own body actually felt like, and having the confidence to trust that knowledge. Many people don’t realize how much they’ve normalized discomfort. When you're told to push through or downplay your pain, your baseline shifts. You start confusing resilience with silence. But I had a reference point. I knew what my normal was. And this wasn’t it.
If you recall, ChatGPT had become publicly available in November of 2022, and so I was already experimenting with it for work when I started to feel a little off. My curiosity made me wonder what if, instead of Googling what I was feeling, what if I asked ChatGPT? Google felt like a fear factory: endless links, worst-case scenarios, and information overload. ChatGPT felt different. It was structured, calm, and nonjudgmental like a thinking partner. I asked it things like: “Why am I so tired? Could it be hormonal? What else should I track this week?” It didn’t give me yes/no answers. It gave me possibilities. It connected the dots. It nudged me to keep observing.
When Systems Fall Short, Patients Scaffold: How AI Helped Me Navigate Cancer
When I think back, what really sends shivers down my spine is that I had also spoken to an older cousin about my symptoms around that.
“It’s probably perimenopause,” she had said, lovingly. I wanted to believe her, but AI had already signalled otherwise: This might be serious. You should get checked. That contrast was critical. One voice soothed. The other sharpened. I chose the one that made me act.
A few days later, I had an ultrasound. It revealed an 8 cm mass on my left ovary—one that would double in size by surgery three weeks later.
Diagnosis: AI as Anchor in a Flood
Hearing “ovarian cancer” felt like being hit with concrete. But even in the chaos, I wasn’t starting from scratch.
I had a timeline of symptoms. I had a basic grasp of lab language. I had already practiced asking hard questions. All because AI helped me build that foundation.
I asked it:
“What subtype is this tumour?”
“Should I push for genetic testing?”
“What questions should I ask at my first oncology appointment?”
It helped decode jargon in test results and chemotherapy plans. It helped me prepare:
“Which meds are most likely to cause nausea or fatigue?”
“What are common coping strategies for these side effects?”
It helped me translate culture into care:
“What South Asian foods are gentle on digestion during chemo?”
“Can you adapt this Western cancer nutrition recipe into something daal-inspired?”
This wasn’t trivial. Culturally relevant care can make the difference between following through on nutrition recommendations or not. Not everyone can, or wants to, survive on chicken broth and crackers.
AI also helped me carry emotional weight that the system didn’t catch. It helped me process questions that often go unspoken:
“How do I talk to my kids about this?”
“Why do I feel angry at people who are trying to help me?”
When Systems Fall Short, Patients Scaffold: How AI Helped Me Navigate Cancer
Yes, I had support. My husband stepped up in every possible way. That man deserves an award for how he showed up for our family, and for me. But even the most loving partner has a breaking point, and I didn’t want to push him to it. There were things I might have kept in. But I didn’t have to—because at 2 am, when I was spiralling, I knew I didn’t have to wake him up. I had another option. AI was there. Limitless. Nonjudgmental. Always ready to listen. It made me feel less like a burden. No one said I was one, but ask anyone who’s gone through something like this. That fear creeps in. Not because others make us feel helpless, but because we’re not used to being helpless. It wasn’t therapy. But it was therapeutic.
Post-Treatment: Rebuilding with Scaffolds, Not Scripts
People assume survivorship is the finish line. It’s not. It’s the beginning of something uncharted. When treatment ends, and the healthcare system steps back, you are made to feel as if you're “done.” You’re supposed to bounce back. Be grateful. Be normal. But I wasn’t. I was in full surgical menopause at 36. My energy was unpredictable. My thoughts were foggy. My identity was in pieces. This wasn’t a return. It was a redesign. And again, AI helped. It helped me:
Build new routines around fatigue and family life. Create language for needs I hadn’t fully articulated to myself.
Rediscover purpose without reverting to the person I was before.
AI became the external brain I could borrow, when mine felt foggy, it gave me structure to think through pain, confusion, identity shifts, and reintegration. It wasn’t always profound. I didn’t need it to be that way at all times. Sometimes it helped me plan meals. Sometimes it helped me reframe thoughts. But it was always there. And that mattered.
What the Healthcare System Missed: The Gaps You Can’t See Without Asking
As someone navigating the healthcare system, I had many advantages: education with a science background, access, insurance, and digital literacy. And I still almost missed the signs, and wasn’t always told what all of my options were. A lot of those gaps were filled by me through selfadvocacy and exercising my curiosity. That tells me the problem isn’t individual vigilance.
When Systems Fall Short, Patients Scaffold: How AI Helped Me Navigate Cancer
As an engineer, I can name structural fragility when I see it. But I want to make it clear. I am not saying that healthcare fails us maliciously. It fails because of its design, because the design is outdated.
It was built for volume, not nuance. It rewards clarity and wasn’t built for ambiguity. It listens better to patients who speak its language, and flattens those who don’t. I don’t blame the providers. They’re not the architects of this system. They’re suffering under its weight, too. AI didn’t replace my care team. It helped me show up better to it. But if I had to work this hard to be heard, what’s happening to everyone else?
An Example of Cultural Blind Spots
Here’s one example. At no point during post-treatment did anyone mention increased cardiovascular risk. But something in me, maybe instinct, maybe engineering intuition, flagged it. So I asked ChatGPT:
“Are there specific health risks for South Asian women in surgical menopause after chemotherapy for ovarian cancer?” The answer was striking.
South Asian women are at higher risk for insulin resistance, cardiovascular disease, and type 2 diabetes—risks that are further amplified by chemotherapy and surgical menopause. These conditions often emerge at lower BMIs than in Western populations and go undetected due to Eurocentric baselines in survivorship care. That information didn’t come from my care team. It came from a prompt One that AI answered neutrally, accessibly, and without judgment Was it perfect? No But it opened the door for me to ask better questions and advocate for care that accounted for my biology, not a generalized default.
This is where the notion of “bias” in AI deserves a second look. People worry that AI will reinforce structural biases, and it can. But so do the systems we already trust. Doctors are trained on data that’s historically limited and demographically narrow
AI can’t see me It can’t judge me based on what I wear, how I speak, or what my skin looks like when I enter the room. That’s a limitation. But it’s also a kind of freedom.
When Systems Fall Short, Patients Scaffold: How AI Helped Me Navigate Cancer
The Bigger Picture: AI Literacy as a Public Health Imperative
Let me be clear: this isn’t a tech endorsement. I’m not saying ChatGPT should replace your doctor, nor would I ever! I’m saying that, like any tool, it reflects the intention and literacy of the person using it. And that’s the real risk: not that people will use AI, but that they’ll use it badly or be too afraid to use it at all. The truth is, the genie is out of the bottle. Patients are already using AI. Some are cautious. Some are reckless. Some don’t tell their providers at all, for fear of being dismissed.
That’s what makes this moment urgent. We need AI literacy on both sides of the conversation. Not just to protect people, but to empower them. Not to replace providers, but to allow patients to participate more meaningfully in their own care Because the worst-case scenario isn’t that patients use AI. It’s that they use it in secret. And when that happens, trust erodes, safety erodes, and opportunities for collaboration vanish.
Not the Hero. Just a Mirror. AI didn’t save me. It didn’t diagnose me. It didn’t cure me. But it helped me think clearly in a fog. It helped me speak up when I was scared. It helped me prepare when the system didn’t have time. It helped me design a life when survivorship felt like a blank page
AI wasn’t the main character. I was. But it was the tool that helped me stay whole in a system that often asks patients to fragment themselves just to be seen. When systems fall short, patients scaffold. Let’s make sure they’re not doing it alone.
A mechanical engineer, certified coach, and change management expert With over 15 years of experience, she specializes in project and change management, delivering sustainable, inclusive solutions that address complex challenges across organizations, communities, and industries Certified in EQ-i 2 0/EQ 360 and ProSci Change Management, Alvina combines technical expertise, emotional intelligence, and coaching to guide organizations through transformation. She integrates a systems-focused engineering background with a deep understanding of human dynamics, ensuring that solutions are both technically sound and people-centered. Following her ovarian cancer diagnosis in 2023, Alvina shifted her focus toward healthcare transformation, patient engagement, and system efficiencies.
Alvina Nadeem
From Despair to Hope: My Journey with Leukemia and CAR T-Cell Therapy
by Camille Leahy
I’ve faced many challenges in life, like so many others. But 2019 was a year I’ll never forget. At the time, I had been working in a long-term care facility in the dietary department for 17 years. While I didn’t always love my job, I truly enjoyed connecting with the residents. Unlike other staff who had to invade their personal space for care, I got to bring joy through food and conversation. I know I made a difference in their lives.
Unfortunately, the work environment had become incredibly toxic. I was verbally abused by my manager, bullied, and intimidated—even though I was a dedicated and hardworking employee. As a single mother trying to work full-time without support, I was offered no compassion. I was overworked, often unable to take proper breaks, and it began to take a toll on me—mentally, physically, and emotionally. I wasn’t the mother my daughter deserved. I was exhausted and worn out.
Eventually, I had to take a sick leave. But being the sole provider made that decision even harder. I was overwhelmed by the thought of returning to that environment, but I knew I had to find something else. I began applying to every job I could find—cleaning homes, cashier work, anything that would keep me from going back. I was starting to lose hope. Then, in December 2019, I got hired at my local hospital in their dietary department. I was so nervous. I was about to give up a job with full benefits, five weeks of paid vacation, sick time, and guaranteed hours. But my mental health—and being a better mother—mattered more. I quit the old job, prepared for the new one, and used up any remaining benefits before they expired.
Still, I was struggling. Depression weighed heavily on me, but I kept pushing forward. I decided to finally have a wisdom tooth removed something I had avoided for years I knew I wouldn’t be able to afford it once my new job (which came with no benefits) started. The extraction was awful. I was in pain for weeks, but the dentist assured me it was normal. I was put on antibiotics, just in case. My doctor, preoccupied with completing paperwork for my new job, didn’t take my concerns seriously.
The pain didn’t go away. I started getting dizzy spells and nearly passed out after taking hot showers. One day, while my daughter was at school, I had had enough. I called my mom and asked her to take me to the ER.
From Despair to Hope: My Journey with Leukemia and CAR T-Cell Therapy cont'd
That decision changed my life.
It was January 5th, 2020. I was scheduled to start orientation for my new job on January 7th—at the same hospital where I was now a patient. The ER was overcrowded. I was dizzy, nervous, and scared. Blood tests revealed my hemoglobin was in the 70s. I needed an urgent blood transfusion.
I was placed in a supply room with a hard doctor’s office bed. After receiving two transfusions, I was told I’d been referred to a blood specialist for possible anemia. I was eventually moved to a stretcher in a hallway, facing the trauma room, next to a bathroom. I stayed there for over 24 hours. It was awful.
Then a hematologist came to see me. He asked if I had symptoms like weight loss or bruising. I hadn’t. In fact, I had gained weight due to exhaustion and depression. Still, he said more tests were needed—maybe a blood infection or lymphoma—but reassured me it wasn’t acute leukemia. I often wonder why he was so sure.
Lying in that hallway, watching people die and families grieve, I couldn’t shake the fear. And now, the possibility of cancer? I couldn’t have cancer—I was my daughter’s only parent. Eventually, I was admitted. But with no beds available, I was placed in an overflow room in the cancer unit with three male patients. My stretcher was pushed against a wall, and I received a bone marrow biopsy at my bedside. I was in pain, barely able to function. Something was very wrong.
Then came the news: Acute
Lymphoblastic Leukemia. End-stage.
I was stunned. Out of all the cancers, I never imagined leukemia. It’s not supposed to be hereditary, yet my grandfather died from it in 2008. A close family member was diagnosed with CML in 2007, and three other relatives had blood-related illnesses. My worst fear had come true. My mom and daughter were in the hallway waiting to visit. I was in shock. I asked to see my daughter and begged the staff to tell my mom, because I couldn’t. Watching my daughter’s face as they broke the news shattered me. She was only 11 and clung to me, terrified. I wasn’t going home. The next day, I was referred to Princess Margaret Cancer Centre.
From Despair to Hope: My Journey with Leukemia and CAR
T-Cell Therapy cont'd
From Newmarket, I was transferred by ambulance to Toronto. A family member met me there. I underwent an overwhelming intake process—dozens of vials of blood, endless tests. Thank God I had someone with me to take notes. I was told I’d be sent back to my local hospital until a bed became available. When it did, I returned to Princess Margaret for what would be a month-long induction using the Dana-Farber protocol. I was told it was treatable, and although the journey would be tough, I could eventually return home for maintenance treatment. That January was brutal. Being away from my child, hearing her cry, broke me. But my mother drove her to visit almost daily. Her support gave me the strength to fight.
There were moments during that month when I didn’t think I would make it. I developed two pulmonary embolisms and a Hickman line infection, and it nearly killed me. The pain, the fear, theconstantmonitoring—itwasoverwhelming.ButbyGod’sgrace,Ipulledthrough. Then, just when I thought I was in the home stretch, the induction failed. Leukemia blasts were still present. I needed another month of treatment. I was heartbroken. This wasn’t the plan. I begged to go home—just for a weekend—and they agreed. But when I arrived home, I collapsed. I couldn’tevenwalkuponestep.Still,Istayedtheweekend.Ineededthattimewithmydaughter. Back in the hospital, I was given immunotherapy instead of chemo. It worked, but my leukemia was deemed aggressive. A stem cell transplant was recommended. I was devastated. The pandemichadjustbegun.HowcouldIfindadonor?
I prayed. My faith carried me. None of my siblings were a match, but they found a 9/10 match. After complications with the first donor, the second one came through. On July 9, 2020, I received my transplant. I was isolated and in agonizing pain, but I survived. Eight months later, in March 2021, the cancer returned. I was admitted again—alone due to COVID. I was told there were no options left. I couldn’t believe it. I was dying.
Then I remembered a conversation during transplant prep—about CAR T-cell therapy. I asked about it, and my doctor said a trial had just started in Ottawa. I didn’t wait. With help from a family member and a stroke of divine timing, I contacted the lead investigator, Dr. Natasha Kekre.
After multiple attempts and setbacks—including infections, a central nervous system relapse, and nearly being denied—I finally received my modified T-cells on September 15, 2021, through the CLIC-01 trial. That therapy saved my life.
From Despair to Hope: My Journey with Leukemia and CAR T-Cell Therapy cont'd
Recovery wasn’t easy. In 2022, I went into heart failure after being misdiagnosed in the ER. But with medication, my heart is now functioning fully.
As of September 15, 2025, I will be four years post-CAR T-cell therapy with no evidence of disease. I still face health challenges, and the fear of relapse is always there. But I keep going—for my daughter, for my faith, and for the hope that my story can help others.
Today, I share my journey openly as a keynote speaker, panellist, and patient advocate. I’ve had the honour of speaking across Canada and the U.S.—from Parliament Hill to Hollywood— amplifying the message that access to innovative treatments like CAR T-cell therapy must not be reserved as a last resort. Lives depend on early access, compassionate care, and being heard.
I now advocate for better treatment options and greater access to groundbreaking clinical trials, because patients shouldn't have to wait until they're out of options to receive lifesaving care. My first priority will always be living a full life with my daughter, but I also want to continue bringing hope to this community. You are not alone. Together, we can make the impossible possible.
Visit our website at: https://www.healcanada.org/survey/ Check often as
gIn this vibrant corner of E3 Advocacy Digital Magazine, we're excited to introduce you to our "Living Well" section – a treasure trove of inspiration and guidance for those seeking a healthier, happier, and more balanced life. Our mission is to empower you with expert insights, the latest health trends, and personal wellness stories that resonate with real-life challenges and triumphs.
Here, we explore the many facets of well-being, from nourishing your body with wholesome nutrition to rejuvenating your mind through meditation and mindfulness. You'll find practical advice on exercise, mental health, and preventive care, all tailored to fit into your busy lifestyle.
But "Living Well" is more than just a guide; it's a community. We encourage you to engage with us, share your journeys, and learn from others who are on similar paths. Whether you're taking the first steps towards a healthier you or are further along your journey, we're here to support and inspire you at every turn.
"Living Well" will provide topics that matter the most to your health and happiness. Let's celebrate the joy of living well together!
The Water Myth
by Dr. Christopher Labos
It is a common belief that you have to drink 68 glasses of water per day. Almost everyone has heard this recommendation at some point, although if you were to ask someone why you need to drink this much water every day, they probably wouldn’t be able to tell you. There is usually some vague idea that you need to drink water to flush toxins out of your system. Perhaps someone will suggest that drinking water is good for your kidneys since they filter the blood and regulate water balance. Unfortunately, none of these ideas is quite true, and the 6-8 glasses myth comes from a fundamental misunderstanding of some basic physiology.
Water is, of course, essential for life, and we humans cannot go very long without it. In fact, compared to most of our animal brethren, we are some of the most water-inefficient beings on the planet. The reason is that we lose quite a bit of water every day, and we have no real way to store excess water or replenish our lost reserves short of simply drinking more of it. Unlike many other animals, we cannot go long stretches without a supply of fresh drinking water.
Over the course of the day, we lose some water as water vapour from our breath, and some water is lost through sweat. These water losses are called insensible water losses because we are not aware of them, as compared to the water lost in urine. Though many people think sweat is a consequence of exercise or of being hot, even someone living in a cold climate who is not exercising loses somewhere between 5001000 ml of free water through sweat every day. Interestingly enough, this type of sweat is almost pure water, colourless and odourless, and is mainly used by the body for temperature control by drawing heat off the skin and allowing it to dissipate into the air. The foul-smelling sweat that most people are familiar with is produced by a different type of sweat gland and is an oily substance with little water.
This water loss is essentially inevitable. You will always lose water vapour in your breath, provided you keep breathing, and you will always produce this watery-odour-free sweat even if you move to the Arctic.
Shame-Based Identity: Understanding Its Impact and Path to Healing
Of course, if you move to the tropics, you will produce much more sweat to compensate for the extra heat. But all told, roughly 1.5-2 litres of water loss are obligatory losses that we cannot do anything about. Those who exercise, live in hot climates or have a fever will obviously lose more water because of more sweating. Thus, a human being needs to replenish the roughly 2 litres of water they lose every day from sweating, breathing, and urination. The actual notion of 8 glasses a day originates from a 1945 US Food and Nutrition Board, which recommended 2.5 litres of daily water intake. But what is generally forgotten from this recommendation is, firstly, that it was not based on any research and that, secondly, the recommendation stated that most of the water intake could come from food sources.
All food has some water in it, although obviously fresh juicy fruits will have more than, say, a box of raisins. Suffice it to say that by eating regular food and having coffee, juice, or what have you, you will end up consuming 2 litres of water without having to go seek it out specifically. If you find yourself in a water deficit, your body has a very simple mechanism for letting you know. Put simply, you will get thirsty.
If you are thirsty, drink water. If you are not thirsty, then you do not need to go out and purposefully drink 6-8 glasses of water a day, since you will probably get all the water in your regular diet. One important caveat to remember, though, is that on hot summer days, your water losses from sweating go up, and if you plan to spend some time outdoors, having water with you is important to avoid dehydration and heat stroke. While the thirst reflex is pretty reliable, it does tend to fade with age, and older people are more likely to become dehydrated without realizing it. Thus, the take-home message is to drink water when you are thirsty, but on very hot days, it might not be a bad idea to stay ahead of the curve and keep hydrated.
Drinking more water than necessary is not particularly dangerous. Drink more water, and you will simply get rid of it in your urine. In fact, the main function of your kidneys is to make sure that water losses equal water intake. If they don’t and if water intake exceeds water loss, then you will start retaining water, and every day you will accumulate more and more until you start to see swelling in your legs (gravity drags water downwards, which is why your feet swell first).
Shame-Based Identity: Understanding Its Impact and Path to Healing
This is the problem people with heart failure and kidney disease experience; they accumulate water because they cannot excrete it from their bodies. Thus, while drinking excess water is unlikely to cause any major problems, there are some patients who will likely be told by their physicians to restrict water intake because of their heart or kidney disease.
There is no real advantage to drinking more water. Some people believe that drinking more water helps flush out toxins or helps your kidneys in some way, but that is actually not true. Your kidney filters about 180 litres of blood every day. Given that you have about 5 litres of blood inside you at any given moment, your kidney filters the equivalent of your blood volume 36 times per day.
Any excess water you drink is a drop in the metaphorical bucket and shouldn’t make a difference.
But you don’t have to take my word for it. A recent study in the Journal of the American Medical Association tested this very question. Researchers randomized 631 patients with kidney disease into a hydration group that was encouraged to drink more water and a control group that was told to maintain their current habits. In the end, drinking more water did not offer up any benefit in terms of kidney function.
There is a common notion out there that water, given that it is so critical for life, must be able to prevent disease. Sadly, drinking more than the necessary daily amount will not flush toxins out of your system, nor will it help your kidneys. The only change you will see is that your urine goes from yellow to clear, which actually has no medical implications for your health. So, you don’t have to waste any energy worrying about getting your 6-8 glasses of water a day You have been unconsciously doing it every day of your life.
This article was originally published by the McGill Office for Science and Society and appears on E3 Advocacy with the kind permission of Dr. Christopher Labos and the McGill OSS. Original article: The Water Myth
Dr. Christopher Labos
A cardiologist with a degree in epidemiology who devotes much of his time to pursuits of research, teaching, and podcasting. Dr. Labos is also a freelance contributor to the Montreal Gazette and CJAD, and a regular voice on CBC Radio and has appeared on CTV and CBC Television. For more information, visit the Office for Science and Society
Soak It Up: 3 Intentional Ways to Reclaim Summer
by Jennifer Swartley, Executive Coach
As we gear up for the summer months ahead, let’s set some intentions to make the most of this spacious season. Whether you work a job that offers more time off, you’re a caretaker with kids home from school, or you want to enjoy your weekends and the warm weather more fully, now’s the time to create a plan. One that ensures you’re soaking it all in, not looking up in September wondering where the time went.
Here are my top three tips for being intentional with your summer:
1. Determine how you want to feel, not just what you want to do
We live in a society obsessed with productivity. That mindset often spills into our downtime, filling even our leisure hours with tasks and to-dos. We become human doings instead of human beings. This summer, I challenge you to set a goal rooted in how you want to feel rather than just what you want to accomplish.
Let a specific emotion be your compass this summer, helping you recalibrate your nervous system and your priorities.
For me, this summer is about play. I want to tap into a sense of youthful fun and lightness. I’ll be saying yes to silly games with my kids, trying new hobbies just for fun, and picking up casual games like pickleball with a beginner’s mindset. I’ll chase fireflies and swing at the park because prioritizing play helps unlock a part of me that often gets buried during the structured year. Additionally, it aligns well with my core values of curiosity and learning.
Your Turn: What’s your word? How do you want to feel this summer? What’s one small thing you can do today to embody that feeling?
Soak It Up: 3 Intentional Ways to Reclaim Summer cont'd
2. Unplug. Really unplug
Lately, I’ve been craving a social media break and time away from my phone. Summer offers the perfect opportunity to reclaim some of that space. My phone holds my calendar, email, work apps, and so much more. It tethers me to responsibility and constantly interrupts my day with reminders of what needs to be done or what I should be paying attention to. While summer doesn’t erase those obligations, it does invite me to create more pockets of presence.
I’m starting with 24 hours of technology-free time each week and will build from there. Research shows unplugging reduces stress, improves focus, and enhances well-being. More importantly, it helps me be more present with my husband and kids, in my relationship with myself, and in the work that matters most. Presence is where joy lives. And when we practice it intentionally, even briefly, we start to feel more grounded, more attuned, and more alive.
Your Turn: When will you unplug this summer? Will it be a daily ritual, part of your vacation, or a tech-free weekend? Set the intention and make it happen.
3. Carve out more YOU time
Between work and family demands, our personal time often gets pushed to the scraps at the end of the day. It’s no wonder we default to scrolling or zoning out in front of the TV.
But summer gives us a chance to reset that rhythm. We can carve out more time for our own creative pursuits —those acts of self-expression that tap into our natural gifts, interests, and talents. It’s what my dear friend and mentor, Eve Rodsky, has coined as Unicorn Space
Soak It Up: 3 Intentional Ways to Reclaim Summer cont'd
This summer, I’ll be returning to writing and sharing my articles more consistently with my community of burnt-out overachievers eager to rebalance their priorities and redefine success. Whether it’s writing, cooking, pottery, or joining a community choir, permit yourself to explore your creative spark. Protect it like it's your job.
Your Turn: What’s calling to you creatively right now? If you’re unsure, take a moment to reflect on what sparks your interest and passion. What would it take to make time for it? And can you believe, just for a moment, that you’re worth it?
I hope these simple shifts help you reclaim your summer with more presence, joy, and intention. I’ll be the one playing lawn games without my phone in hand, following my creative pursuits. I hope you will, too.
Jennifer Swartley
A World Coach Institute (WCI)-certified executive coach trained in the Fair Play method. She helps professionals redefine success on their own terms and avoid burnout. Connect with her at jenniferswartley.com, on Instagram @jenswartley, or via LinkedIn at Jennifer Toth Swartley.
From Whisper to Wellness: The Power of Preventive Care
by Pranavi Thampi
Listen to the Whisper Before It Becomes a Scream
Health isn’t just the absence of pain. It’s how freely we move, how deeply we breathe, and how resilient we feel in our everyday lives. At its core, movement is life. From the atomic dance inside our cells to the rhythm of every breath we take, life is a constant flow of motion. When we move, we thrive
As a holistic healthcare practitioner, I’m passionate about helping people move, live, and thrive in ways that go beyond chasing symptoms. My approach is rooted in long-term wellness and proactive care. Whether it’s through Clinical Massage Therapy, Traditional Chinese Medicine/ Acupuncture, or a blend of both, the goal is simple: support your body before it screams for help.
The Wisdom of Prevention
The body holds answers long before pain arrives. Every ache, every bit of tension or tightness, is a clue, an early message, not a curse. When we learn to pay attention to these whispers, we can shift from a reactive to a proactive mindset. That’s where true healing begins.
Quick fixes often mask deeper issues Sustainable healing tends to come from understanding the body’s mechanics, alignment, and its innate capacity to recalibrate and recover When flow is restored, function follows, and when the body functions well, it feels well. Pain is often the body’s way of sending a love letter in ALL CAPS. Why wait for the all-caps version when you can respond to the whisper?
What Sets This Practice Apart
Blending the precision of modern sports therapy with the wisdom of Traditional Chinese Medicine (TCM) offers a powerful, whole-person approach to care. It's not just about where it hurts, but why it hurts and how to keep it from coming back.
From Whisper to Wellness: The Power of Preventive Care cont'd
There are no shortcuts in true healing. It takes strategy, consistency, and intentional care guided by experience and insight. Healing doesn’t have to be a solo journey; collaboration, encouragement, and celebrating the small wins along the way can make all the difference. Healing isn’t just physical. It’s emotional. It’s energetic.
Start Where You Are
Spending time with older adults reveals not only deep wells of wisdom but also the regrets that can come from neglecting the body’s quiet messages over time. We can’t stop aging, but we can influence how we age. Will 60 mean a medicine cabinet full of prescriptions, or being strong enough to climb mountains? That path starts with the choices we make today
One simple, sustainable choice is to prioritize consistent care, not because something’s wrong, but because you want to stay well. That’s prevention in action.
Our bodies carry us through long days, physical and emotional strain, workouts, stress, and sleepless nights. Even when we feel "fine," micro-tensions quietly accumulate. If left unaddressed, they can lead to pain, fatigue, poor sleep, lowered immunity, or burnout. Regular integrative care practices like massage therapy, acupuncture, or others can act as a monthly reset. Over time, they help the body build resilience, recover faster, and stay in balance, much like routine maintenance keeps a vehicle running smoothly
You might be wondering, “Okay, but what should I do?”
Here’s one simple, game-changing habit I recommend: Consider booking yourself in for monthly Clinical Massage and Acupuncture sessions, ideally done back-to-back. I’ve seen firsthand how powerful this combination can be. Think of your body like an F1 car. Even while racing at top speed, those cars still need regular pit stops, don’t they? Just like that, you’re not meant to run full-throttle without regular support
Now, think of your clinician as your personal pit crew, your body’s mechanic. They assess for wear and tear, optimize movement, and fine-tune your system to keep everything operating efficiently. While Clinical Massage Therapy acts as the mechanical tune-up to reduce pain, improve circulation, and restore range of motion.
From Whisper to Wellness: The Power of Preventive Care cont'd
Acupuncture helps rewire the internal system by calming your nervous system, reducing inflammation, and restoring the vital psycho-somatic communication between your brain and body.
Together, they don’t just address symptoms; they support long-term function and resilience
This isn’t luxury, this is strategic, preventative care. Just like that F1 car, your body performs best with consistent maintenance.
A Final Thought
Your body isn’t just a machine to fix; it’s a story to understand. Every ache, every stretch, every breath is part of your narrative Let’s not wait for pain to become a crisis Let’s listen now Healing is a journey, not a destination. And with the right support, your best health is still ahead of you. You got this!
Pranavi Thampi
Doctor of Acupuncture and Traditional Chinese Medicine (TCM) and Clinical Sports Massage Therapist (RMT), brings over 13 years of hands-on experience in integrative health.
Specializing in musculoskeletal and neurological care, sports injury rehab, acupuncture, and moxibustion. She currently practices at Altitude Collaborative Health and Clinic Sport & Health in Calgary. In 2025, Pranavi was awarded the Exceptional Woman of East Village, a recognition that reflects her ongoing commitment to healing, empowerment, and making a positive impact in her community. She can be contacted at Calgary | (403) 805 9021 | pthampi14@gmail.com
The Dirty Dozen & Clean Fifteen: A Practical Guide to Reducing Pesticide Exposure and Nourishing Your Body Through Whole Foods
by Sue Lemoine, Holistic Nutrition Practitioner and Menopause Coach
When you’re navigating recovery or simply seeking to feel vibrant and strong—what you eat matters. And while we often focus on what to include (like more vegetables, healthy fats, and healing herbs), it’s equally important to consider what you’re being exposed to through your produce
That’s where the Dirty Dozen™ and Clean Fifteen™ lists come in.
Each year, the Environmental Working Group (EWG) analyzes pesticide residue data from the U.S. Department of Agriculture and the Food and Drug Administration. The result? Two simple lists that empower you to make more informed choices about which fruits and vegetables to buy organic, and where it’s okay to save your money
As someone who supports women over 40 in reclaiming their vitality through holistic nutrition, I love these lists because they provide clear, no-shame guidance that anyone can follow, regardless of budget or health status.
The Dirty Dozen™ (2024)
These twelve foods tested highest for pesticide residues, even after being washed and peeled. For those in a vulnerable state of healing (like cancer or disease recovery), reducing pesticide load is especially important for supporting detox pathways and immune resilience
Here are the 2024 top offenders:
Strawberries
Spinach
Kale, collard & mustard greens
Grapes
Peaches
Pears
Nectarines
Apples
Bell & hot peppers
Cherries
Blueberries
Green beans
The Dirty Dozen & Clean Fifteen
cont'd
Tip: If buying all organic isn’t realistic, focus on sourcing just these twelve foods organically when you can. Every swap is a step toward supporting your body with love.
The Clean Fifteen™ (2024)
These fifteen fruits and vegetables had the lowest pesticide residues and are considered safe to buy conventional (non-organic), making them great options if you’re shopping on a budget or working with limited access to organics.
Avocados
Sweet corn
Pineapple
Onions
Papaya
Sweet peas (frozen)
Asparagus
Honeydew melon
Kiwi
Cabbage
Mushrooms
Mangoes
Sweet potatoes
Watermelon
Carrots
Remember: It’s not about perfection. It’s about conscious choices that minimize toxic load while still filling your plate with nutrient-dense, healing food. The Clean Fifteen offers peace of mind in your shopping basket.
Why This Matters—Especially During Healing
Pesticide exposure is linked to hormone disruption, immune system stress, and even carcinogenic effects. When someone is dealing with cancer or disease—or in remission and rebuilding their body—reducing that exposure can help lighten the toxic burden and create an internal environment more conducive to healing. Food is a powerful alchemy Each bite has the potential to either nourish or deplete When we make choices rooted in awareness, we reclaim our ability to turn everyday meals into medicine.
The Dirty Dozen & Clean Fifteen
Your Next Step
You don’t need to overhaul your kitchen overnight. Start small. Swap out one Dirty Dozen item this week for an organic version. Celebrate that shift. Then build from there. The truth is, eating in a way that supports healing doesn’t have to be complicated—it just needs to be intentional
Whether you're in treatment, recovering, or simply looking to fortify your health, remember: you’re not just feeding your body you’re nurturing your life force. If you have any questions, please reach out to me anytime.
Sue Lemoine
A Holistic Health and Wellness Practitioner based in Edmonton, supporting women around the globe through the transitions of perimenopause and menopause. With a deep belief that this stage of life can be one of power, clarity, and joy, Sue helps her clients naturally balance their hormones through personalized nutrition and lifestyle strategies. Her programs gently guide women back to vitality, reducing symptoms, restoring confidence, and reigniting their spark. If you're navigating the challenges of perimenopause or menopause and are ready to feel like yourself again, reach out for a complimentary consultation: sue@flourish-nutrition.ca.
1 medium-sized apple, cut into 1/8” discs for grilling
Fresh Minced flat-leaf parsley or cilantro for garnish
Preheat Grill to medium-high
Add chopped kale to a medium bowl and drizzle with olive oil Gently massage the kale with fingers to distribute the olive oil and soften the leaves. Add the goat cheese and cranberries and set aside.
Drizzle or spray each mushroom cap with olive oil and place directly on the grill. Cook for about 3–4 minutes per side, turning once. When done, remove and place on a serving plate, gill side up. Grill the slices of apple on the outer edges of the grill for about 1 minute, remove and cook. Once cooled, core the center, dice into small pieces and add to the kale mixture
Generously fill the mushroom caps with the topping and serve
Salmon on Cedar Plank with Cherry Salsa
For the Salsa
1 large filet of wild-caught salmon
Cherry Salsa:
2-3 cups cherries, seeded
2-3 nectarines, skins on, diced in small pieces
4 large fresh limes, juiced
4 large garlic cloves, minced
1 ½ cups of grape tomatoes, cut into quarters
½ jalapeno pepper, seeded and diced
2-4 Tbsp fresh cilantro, diced
Combine all salsa ingredients in a bowl and allow to sit for at least an hour or more (best if made the day before)
Remove the plank from the water, dry slightly
Spray both sides with cooking spray and place the plank on the grill with the smooth side up.
Allow the wood to heat up for about 5 minutes with the grill closed before adding the fish. Place the filet on the wood, skin side down. Season with salt and pepper, cover and grill for about 8 – 10 minutes
Open lid and spoon salsa, generously coating the fish. Close the lid and cook further until the fish reaches at least 145 degrees in the thickest part of the fish.
Serve fish on the plank or transfer to a serving dish.
Grilled Fish Tacos topped with Mango Salsa
2 4-oz fish fillets
1 squeeze of lime juice
Dash red pepper flakes
Pinch sea salt
Drizzle olive oil
A handful of fresh, diced garlic
White corn or flour tortillas
Shredded purple or white cabbage (for topping)
Mango Salsa
1 ½ cups sliced grape tomatoes
1 Tbsp jalapeno pepper, seeded and minced
4 – 6 large garlic cloves, minced
½ purple onion, diced
¼ cup fresh cilantro, chopped
3 – 4 limes, juiced, plus extra wedges to serve
1 – 2 large, ripe mangos, cubed
A dash of sea or pink salt
Preheat grill to medium-high
To prep the fish, toss all ingredients in a plastic bag, add the fish, and marinate for at least 30 minutes in the refrigerator. Take out 15 minutes prior to grilling.
Salsa: Combine all salsa ingredients and set aside.
Grill the filets on a grill grate, sprayed with cooking spray. Cook about 5 minutes per side until flaky (145°F). Remove immediately.
Warm tortilla wraps on the grill about 30 seconds per side.
Flake fish into bite-sized pieces Add a few pieces to each wrap, top with shredded cabbage and mango salsa. Squeeze lime juice on top of the filling. Enjoy!
The Smile File
Something to make you laugh and smile!
I have looked up my symptoms on the internet, and Dr. Google, says I have all these illnesses.
Welcome to the "Ask the Professional" section of E3 Advocacy Digital Magazine, a dedicated space where curiosity meets expertise in the realm of healthcare.
In our pursuit to empower patients and their advocates with knowledge, this section bridges the gap between medical professionals and our readers, offering clear, accurate, and practical answers to your most pressing questions. Whether you're navigating the complexities of clinical trials, seeking advice on managing chronic conditions, or exploring the latest in wellness trends, our experts are here to provide you with insights grounded in the latest research and clinical experience.
Let's embark on this journey of understanding together, fostering a community where informed decisions lead to better health outcomes.
Ask the Professional
Maureen Carpenter, BSC, RN, CD provides her insight
Personalized medications, or personalized medicine, can also be known as precision medicine. Currently, this concept is a prominent research area that is moving forward as an evolution in medical treatments. This is a means to provide a specific care plan for patients to match their unique characteristics by understanding the patient’s genetics and better predicting the best treatment application.
To accomplish this, a tailored approach encompasses genetics, lifestyle and environment, and the target of treatment or area of application.
Genetics play a large part in medication efficacy. Genotyping is utilized to assist in predicting a person’s response to medications. Pharmacogenomics is a field of medicine that focuses on gene variations in a person that can affect how the drugs are processed in the patient’s body. Results of therapy are affected by the body's reaction to the medicines. Personalized medicine is a significantly better treatment option that includes an understanding of the patient’s genetics and enables the best treatment spectrum.
Lifestyle and environmental roles in medication effectiveness are defined through diet, exercise, and exposure to toxins. Toxins can be in food, water, soil, and air.
Targeted treatments are the purpose of precise medicine. Examples of the areas of application for targeted treatments are oncology, cardiovascular diseases, neurodegenerative diseases, psychiatric disorders, diabetes and obesity, arthritis, pain, and Alzheimer’s disease. Blood type and screen with cross-match is a common use of personalized medicine within medical facilities. Blood typing is important prior to transfusion to ensure the patient avoids transfusion reactions. The blood typing and Rh status are determined first. Then the screening is carried out by a lab to look for the presence of antibodies. Antibodies that do not match can create a transfusion reaction, causing a disruption in the infusion of needed blood products. Type and screen are crucial in transplant medicine to verify the recipient’s compatibility with the organ or tissues and to avoid rejection of the same.
health
precision medicines. Research and trials are being developed to aid the patient in successful regimens in the control of the disease effects. The goal is to be able to choose the most effective treatment to obtain remission with minimal side effects, loss of time in failed treatment plans, and cost.
Precision medicine is already in play in many aspects of health care. Diabetics in the USA are given medications to control their disease, with all comorbidities and financial constraints considered. Oncology has developed treatment regimens for specific types of cancer that require targeted treatment and not the ‘one size fits all’ chemotherapy of days gone by. Breast cancer does not get the same treatment as leukemia. Tuberculosis bacterial genes and the patient’s genes are tested to identify potential drug resistance. Treatment for Human Immunodeficiency Virus (HIV) has long been utilizing this approach in the tailoring of “antiretroviral therapy (ART) to individual patients based on their genetic characteristics, viral features, and drug properties.”
There are many areas and applications where Personalized medicine will benefit a patient. Websites are available online to research the area of your interest. Too much information due to the vast array of medical diseases and treatment fields to cover loosely for this publication. This is a fascinating area to research and learn what is being discovered and developed.
National Institutes of Health (NIH)
American Medical Association
Canadian Cancer Society
Canadian Institutes of Health Research
American Cancer Society
Cleveland Clinic
Your resources
Patients, caregivers, Patients organizations, Healthcare professionals and other stakeholders, we want to help you.
You are looking for information on clinical trials to finish...
Canadian Cancer Society. (2023). Inherited cancer and genetic testing. https://cancer.ca/en/cancer-information/reduce-your-risk/getting-screened-forcancer/genetic-testing
Canadian College of Medical Geneticists. (2022). Practice guidelines and position statements. https://www.ccmg-ccgm.org
Government of Canada. (2017). Genetic Non-Discrimination Act, S.C. 2017, c. 3. https://lawslois.justice.gc.ca/eng/acts/G-2.5/
Supreme Court of Canada. (2020). Reference re Genetic Non-Discrimination Act, 2020 SCC 17. https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/18778/index.do
Office of the Privacy Commissioner of Canada. (2021). Protecting genetic privacy in the age of big data. https://www.priv.gc.ca/en/privacy-topics/health-genetic-and-other-bodyinformation/genetic/genetic_privacy/
Ontario Health. (2023). Recommendations for the implementation of pharmacogenomic testing in Ontario. https://www.ontariohealth.ca
Quebec Ministry of Health and Social Services (Ministère de la Santé et des Services sociaux). (2023). Genomic medicine in Quebec. https://www.msss.gouv.qc.ca
Ottawa Heart Institute. (2023). RAPID GENE study: Rapid point-of-care genetic testing in cardiovascular patients. https://www.ottawaheart.ca
Genome Canada. (2024). A roadmap for integrating genomics into Canadian healthcare. https://www.genomecanada.ca
Health Canada. (2021). Guidance document: Applications of artificial intelligence in healthcare. https://www.canada.ca/en/health-canada/services/drugs-healthproducts/medical-devices/activities/international-initiatives/artificial-intelligence.html
National Human Genome Research Institute. (2023). Understanding variants of uncertain significance. https://www.genome.gov/genetics-glossary/Variant-of-Uncertain-Significance Canadian Institutes of Health Research. (2022). Equity and diversity in genomic research. https://cihr-irsc.gc.ca/e/51836.html
Canadian Medical Association Journal. (2022). Understanding the limitations of polygenic risk scores in diverse populations. https://www.cmaj.ca/content/194/27/E943
Canadian Association of Genetic Counsellors. (2023). Find a genetic counsellor in Canada. https://www.cagc-accg.ca
References
National Institutes of Health (2020). Clinical Trials https://www.nih.gov/healthinformation/nih-clinical-research-trials-you
U.S Food and Drug Administration. (2022). Patient-Focused Drug Development: Methods to Identify What Is Important to Patients. https://www.fda.gov/media/131230/download European Medicines Agency. (2021). Patient engagement in EMA activities. https://www.ema.europa.eu/en/partners-networks/patients-consumers Health Canada. (2019). Guidance Document for Clinical Trial Sponsors: Clinical Trial Applications. https://www.canada.ca/en/health-canada/services/drugs-health-products/drugproducts/applications-submissions/guidance-documents.html
COMET Initiative. (2023). Core Outcome Measures in Effectiveness Trials. https://www.cometinitiative.org/
Canadian Cancer Trials Group (CCTG). (2022). Patient Involvement. https://www.ctg.queensu.ca/
Mesa, R. A., et al. (2021). Real-world insights from patients with myeloproliferative neoplasms: A global survey. Leukemia Research, 101, 106537. Harrison, C N., et al (2020). Patient perspectives in myelofibrosis: Emphasizing quality of life in clinical trial design. Annals of Hematology, 99(5), 1049–1057
Canadian Paediatric Society. (2022). Genetic testing and screening in children Retrieved from https://cps.ca/en/documents/position/genetic-testing jamanetwork.com+7cps.ca+7nrbdo.ca+7nrbdo.ca
College of Family Physicians of Canada. (2010). Clinical review of genetic screening benefits. Canadian Family Physician, 56(4), 333-340. cfp.ca
Fan, X., & Jones, L. (2023). Evidence and recommendation for guanidinoacetate methyltransferase deficiency newborn screening. Pediatrics, 152(2), 45-56. en.wikipedia.org
Jones, A. D., Kim, S., Ream, M. A., & Lam, W. K. K. (2021). Prospective identification by neonatal screening of patients with GAMT deficiency. Molecular Genetics and Metabolism, 133(3), 200-208. en.wikipedia.org
Kugel, E., et al. (2024). Balancing consent in genomic newborn screening. European Journal of Human Genetics, 32(5), 587-599.
References
Government of Canada. (2024). Respiratory syncytial virus (RSV) vaccines: Canadian Immunization Guide. https://www.canada.ca/en/publichealth/services/publications/healthyliving/canadian-immunization-guide-part-4-active-vaccines/respiratory-syncytialvirus.html#a1
Kwan A, Rayes HA, Lazova T, et al. Herpes zoster in SLE: prevalence, incidence and risk factors. Lupus Science & Medicine 2022;9:e000574. doi:10.1136/lupus-2021-000574.
Government of Canada (2024). Herpes zoster (shingles) vaccine: Canadian Immunization Guide. https://www.canada.ca/en/public-health/services/publications/healthyliving/canadian-immunization-guide-part-4-active-vaccines/page-8-herpes-zoster-(shingles)vaccine.html#a4
Kwan A, Rayes HA, Lazova T, et al. Herpes zoster in SLE: prevalence, incidence and risk factors
Lupus Science & Medicine 2022;9:e000574. doi:10.1136/lupus-2021-000574
Government of Canada. (2024). Human papillomavirus (HPV) vaccines: Canadian Immunization Guide https://www.canada.ca/en/publichealth/services/publications/healthyliving/canadian-immunizationguide-part-4-active-vaccines/page-9-human-papillomavirusvaccine.html
Gariépy, G., Honkaniemi, H., Quesnel-Vallée, A. (2021). Joy in Older Adults: A Qualitative Systematic Review. Health Promotion International, 36(2), 417–429.
National Academies of Sciences, Engineering, and Medicine. (2020). Social Isolation and Loneliness in Older Adults: Opportunities for the Health Care System.
Holt-Lunstad, J., Smith, T. B., Layton, J. B. (2010). Social relationships and mortality risk: A meta-analytic review. PLoS Medicine, 7(7), e1000316.
Kim, E. S., Sun, J. K., Park, N., & Peterson, C. (2013). Purpose in life and reduced risk of Alzheimer's disease. Archives of General Psychiatry, 70(5), 530–537.
Neff, K. D., & Germer, C. K. (2013). A pilot study and randomized controlled trial of the mindful self-compassion program. Journal of Clinical Psychology, 69(1), 28–44.
ScienceDaily Warm weather boosts mood, broadens the mind
CAMH You’ve heard of the winter blues but what about summer depression?
PsychCentral Can Weather Affect Your Mood?
MentalHelp.net Summer Heat and Human Behaviour
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Heal Canada Team
Cheryl Petruk, MBA B.Mgt.
Cheryl A. Petruk is a multifaceted professional whose career spans patient advocacy, business, and post-secondary education, showcasing her dedication to significantly impacting theseareas
Family circumstances drove her transition into patient advocacy During the last 15 years, she has worked tirelessly to bridge the gap between the healthcare system, patients, and pharma stakeholders Her empathetic approach and dedication to advocacy have made her a respected figure in this field. She lobbies for a healthcare system based on patientcentricity. She supports other patient organizations in becoming better advocates by leading Heal Canada and CACHEducation Cheryl has recently achieved her greenbelt in VBHC,andisinpursuitof herDBA
Wendy Reichental, B.A.
Wendy Reichental, Program Manager, Heal Canada. Wendy holds a B.A. and a Diploma in Human Relations and Family Life Education from McGill University. She is certified in foot reflexology
Throughout her career, she has showcased her insightful perspectives through her writings, which have appeared in publications such as The Montreal Gazette and Ottawa's Globe and Mail She has also contributed to specialized platforms like Booming Encore and Refresh Reflexology Magazine, demonstrating her versatility in addressing diverse audiences. Her unique observation on the initial days of the pandemic lockdown is captured in the anthology Chronicling the Days: Dispatches from the Pandemic, published by GuernicaEditionsinthespring of 2021
Anna Trubaieva, B.A.
Anna Trubaieva, Administrative Coordinator, Heal Canada Anna holds a B A in Managementof OrganizationsandBusinessAdministration
Throughout her career, Anna has brought clarity to complex business challenges by leveraging data With over six years of experience in data analysis and operations, she has held key analyst roles at different companies Her expertise spans reporting, process optimization, and strategic insight generation, supporting decision-making across departments and international teams. Now, she continues to apply her skills to improve performanceandefficiency of Heal Canada.
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