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Dystonia Canada Report A Newsletter from the Dystonia Medical Research Foundation Canada

2017 / 2018

Taking Steps Towards a Cure The Launch of the First Dystonia Clinical Fellowship in Canada Announced IN THIS ISSUE • Real Patients. Real Answers: Results from the Dystonia Survey • Dystonia Patient Grant Recipient Announced • New Dystonia Research Funding in Canada • Upcoming Events, Support Groups, and more! Please consider supporting the dystonia community with a monthly gift. See the back cover for details on how you can make a difference or visit www.dystoniacanada.org/donate. Thank you for your support.

Dystonia Medical Research Foundation Canada The Dystonia Medical Research Foundation (DMRF) Canada is a registered non-profit Canadian charity founded in 1976 by Samuel and Frances Belzberg of Vancouver, British Columbia. DMRF Canada funds medical research toward a cure, promotes awareness and education, and supports the wellbeing of affected individuals and families. DMRF Canada works in partnership with the Dystonia Medical Research Foundation in the United States to ensure funding of the best and most relevant dystonia medical research worldwide through partnerships with the Canadian Institute of Health Research (CIHR) and other like-minded research organizations. BOARD OF DIRECTORS President Samuel Belzberg

Foundation Update Fall 2017 Dear Friends, The DMRF Canada is the only organization that is dedicated to supporting the 50,000 patients in Canada that suffer from dystonia. Our role as a charitable organization is to give those in Canada suffering from dystonia a clear and strong voice. What better way to do this then to allow our patients to speak out for themselves? The first ever Dystonia Canada Survey that was conducted last year, aimed to do just that. Over 600 people completed this survey, representing Canadians from 10 provinces and the Yukon Territory; it represented all ages, genders, and over twenty forms of dystonia. Enclosed you will find a highlight of some of the key findings from this comprehensive survey. The results are troubling. But they also provide hope. We are more committed than ever to continue to work to find a cure. And in the meantime, improve the support systems available to patients today. Read on for great news regarding new funding for the launch of the first ever Dystonia Clinical Fellowship in Canada, as well as new support for dystonia research and patient programs taking place right here in Canada. We simply couldn’t do what we do without you. We continue to make great progress towards our mission – thank you for being such an important part of it. Sincerely,

Vice President Frances Belzberg Secretary/Treasurer Pearl E. Schushei

Stefanie Ince, Executive Director stefanieince@dystoniacanada.org

DIRECTORS Heather Connor Lil Faider Dennis Kessler Rosalie Lewis Bill Saundercook Connie Zalmanowitz Scientific Advisor Mahlon DeLong, MD


DMRF Canada is proud to partner with the Dystonia Medical Research Foundation (DMRF) to fund critical dystonia research. Scientific advancement in dystonia is possible due to support from the DMRF and the research environment the Foundation built over decades. Investment in basic research has led to sophisticated genetic studies and unprecedented drug discovery efforts.

Canadian donations should be sent to: Dystonia Medical Research Foundation Canada 550 St. Clair Ave. West, Suite 209, Toronto, ON M6C 1A5 www.dystoniacanada.org/donate

Taking Steps Towards a Cure The Launch of the First Dystonia Fellowship in Canada DMRF Canada, in partnership with Allergan Canada, is pleased to announce the launch of the first ever Clinical Fellowship for Movement Disorders with a specialty in dystonia. This is great news for the movement disorder community, and dystonia patients, and will help to ensure the succession of qualified professionals who are knowledgeable and passionate about dystonia. This will be a one-year clinical fellowship intended to support the training of exceptionally qualified individuals in preparation for their clinical career in movement disorders with a focus on dystonia and a special competence in use of botulinum toxins. The goal of this program is to encourage growth and support of the field of movement disorders in Canada, with a focus on dystonia to support dystonia patients.

“We’re thrilled to be able to provide this kind of support to the movement disorder community in Canada. In particular we know that it is critical that we support the growth of those individuals who wish to focus on dystonia and are very proud to support this for the first time in Canada” said Dr. Goran Davidovic, Director, Medical Affairs, Allergan. Applications for the fellowships, which are expected to start in July 2018, will be submitted electronically to DMRF Canada by December 2017. Please visit www.dystoniacanada.org/fellowship for more details.

DMRF Funds Research Projects Focused on Treatment DMRF issues a request for research proposals inviting projects on any aspect of basic research on dystonia or clinical work directed at developing new and improved treatments. Here are just a few of the projects funded, including one from Canada. For a complete overview, visit: www.dystoniacanada.org/treatmentresearch. Tremor, Ocillations, Synaptic Plasticity and DBS for Dystonia William Hutchison, PhD, Toronto Western Hospital. Deep brain stimulation (DBS) can be an effective treatment for severe dystonia, but the mechanisms underlying DBS treatment are not well understood. This study seeks to better understand how and why DBS works by investigating cell activity in neurosurgical target sites in the brain. The goal is to gain insight into the mechanisms of tremor and dystonia, and possibly translate this knowledge to develop new targets for drug treatment. Determining the Role of Torsin in Nuclear Pore Complex Assembly Patrick Lusk, PhD, Yale University. DYT1 dystonia is caused by a genetic abnormality that leads to the expression of defective TorsinA protein in cells throughout the body. Researchers hypothesize that abnormal TorsinA disrupts the transport of specific molecules in and out of the cell nucleus. Data from the proposed study are expected to substantially advance understanding of Torsin function and dysfunction, and to facilitate the development of more effective treatment strategies.


Real Patients. Real Answers: The Dystonia Canada Survey Report.

The focus of the Dystonia Survey was to provide a comprehensive evaluation of the experiences, fears, feelings and thoughts of Canadians living with dystonia, to help the DMRF Canada develop a long-term strategy for better supporting this patient population. This pioneering research study was the first of its kind in Canada. Over 600 responses from dystonia patients across Canada were collected over a four-month period. Survey respondents came from Canadians across ten (10) provinces and the Yukon Territory; it represented all ages, genders, and over twenty forms of dystonia. Survey Respondents • 79% of survey respondents were female and 21% were male. • 41% of survey respondents were between the age of 41 and 65, and 31% were over the age of 65. Only 9% were under the age of 41.


Dystonia Treatment Neurotoxin

Botulinum neurotoxin (neurotoxin) is a medical treatment derived from bacteria called Clostridium botulinum. Several neurotoxins are used as injected medications to treat dystonia and other disorders. This class of medication has been approved for use in Canada for nearly 30 years.

• 62% of survey respondents confirmed that they currently receive neurotoxin injections for their dystonia.

When we looked at those individuals who were using a neurotoxin bases on the form of dystonia they had, we noticed some clear differences. 89% of individuals who suffer from blepharospasm currently receive neurotoxin, while only 32% of patients who suffer from generalized dystonia currently receive this form of treatment.

Frequency of Use: 63% receive their injections every 12 weeks. 19% of individuals receive their injections less frequently than every 12 weeks, and 18% are being injected more frequently (either every 6 weeks, 8 weeks or 10 weeks). Use by Age: A higher percentage of survey respondents over the age of 41 were users of neurotoxin than those under the age of 41. • For those under the age of 25, only 12.5% were users of neurotoxin, while for those individuals between the age of 26 and 40, 55% were users of neurotoxin. 67% of individuals over the age of 65 reported having neurotoxin injections. This finding only clarifies that younger patients have more generalized dystonia and are therefore less likely to receive injections. How Neurotoxin Treatment is Covered: For the most part, dystonia patients who receive neurotoxin treatment are covered in part or in full, either by private insurance or by a provincial plan. 33% of responders confirmed that they have private insurance, but that it doesn’t pay for 100% coverage. 29% confirmed that they are 100% covered by their provincial plan, and 24% confirmed that they have private insurance that pays 100% of their medication cost. Most Common Concern about Neurotoxin: For those individuals who are currently taking a neurotoxin, we asked “what concerns you the most about your neurotoxin treatment”. The most common answers were:


The Real Truth:


We asked: “What Is the Biggest Challenge Faced with Your Dystonia?” Depression: The most frequent answer to this question was some form of anxiety and/or depression — this represented 32% of all responders. Some patients broke this down further, and specified that this was due to social anxiety and embarrassment to be around people when visibly disabled (13%). Others noted that they felt depressed about losing their ability to do basic tasks they once took for granted (14%). Posture, Mobility, Coordination, Motor Control: In some instances, the challenges were specifically related to the type of dystonia an individual had. For example, of the people who complained of vision problems, 77% of them were diagnosed with blepharospasm. The most common challenge for patients with focal foot and focal hand dystonia was issues related to posture, mobility, and coordination. (58% of focal foot patients, and 42% of focal hand patients). Pain: When asked this question, many people confirmed that pain is the biggest challenge of living with dystonia. Financial Stress: Employability and Financial stress was named as one of the other challenges an individual faced due to their dystonia. Of those individuals who take a neurotoxin and who were under the age of 65, 14% said that their dystonia could cause them to take time off work. People between the ages of 41 and 65 reported financial issues as their greatest concern (78%) more often than other age groups. Not Enough Support Overall, there is a feeling that there is not enough support for dystonia patients in Canada – both within the medical community, as well as within the public. There is a feeling of frustration and a call on the DMRF Canada to help raise awareness for dystonia to ensure all dystonia patients are getting the medical help they need. This is an overview of the key learnings from the survey. Please note you can order a printed copy for yourself or for family members, and doctors and professionals in your community. Simply request your copy by emailing: info@dystoniacanada.org.


“I think there is very little public info on how debilitating this condition can be. The diagnosis is very empiric and almost nobody knows about dystonia”

Moving Forward with Hope Clearly there are several opportunities available to better support the dystonia community in Canada, but the Dystonia Survey was an important first step that has provided us with a better understanding of the experiences, fears, feelings and thoughts of Canadians living with dystonia. It also shows us that the dystonia community is incredibly brave, strong, and not backing down from their condition.


Our goal is simple: To do more. We want you to know that we will continue to work every day to do more, and to provide hope. You will continue to see this in our work, our initiatives, and the pages in this newsletter. Please continue to reach out to the DMRF Canada for help, or to provide feedback on the work done so far. A sincere thank you to Merz Pharma Canada for their very generous support of the survey, and the follow up report.

DMRF Canada extends our condolences and gratefully acknowledges the generous gifts received in memory of the following: Donna Skalmarud Dorothy Pearsall: Dorothy, Mother of DMRF Canada Sudbury Support Group Leader, Mary Guy, actively supported Mary by generously sponsoring her over the last 20 years in the Sudbury Freedom to Move 5 km Walk-and-Wheel for Dystonia Medical Research; by donating door prizes for the Sudbury walk; by making donations at Christmas as a Christmas present; and by pampering Mary when she visited her in Pickering. Dorothy passed away peacefully, at the age of 93, with her family by her side. Dorothy will be dearly missed by all and the DMRF Canada wishes to extend our heartfelt sympathies to her daughter Mary, all of Dorothy’s family and friends, and the Sudbury Dystonia Support Group.

Dystonia Bloggers We are proud to partner with dystonia bloggers that are living with dystonia and are a voice for the community. For a list of some of the dystonia bloggers we love, please visit: www.dystoniacanada.org/bloggers If you have recommendations, please let us know! Email Trishamondal@dystoniacanada.org.


New Support Programs for the Dystonia Community The First Ever Dystonia Patient Grant Recipient is Announced We are pleased to announce the DMRF Canada has awarded the first ever dystonia patient grant. The Jackson Mooney Dystonia Patient Grant was established to provide financial assistance of up to $5,000.00 for Canadian residents who are living with dystonia, in financial need and committed to enhancing their current situation through furthering their education. “My personal experience, and that of many others with dystonia, is that it can profoundly impact our ability to execute some, many, or all of our work tasks in as timely and focussed a manner as we enjoyed prior to the affect of the disease. This grant is aimed at helping in a small way, this particular aspect of our journey.” - Jackson Mooney, who established this grant in partnership with his brother Jefferson. We’re thrilled to announce our first grant recipient, Neil Merovitch. Neil was diagnosed with Cervical Dystonia at the age of 7, and later his diagnosis become generalized dystonia. Though he has faced numerous challenges, Neil has proven to be an outstanding scholar, and a true example for others suffering from dystonia. Neil completed his undergraduate degree at the University of Dalhousie and Neil is currently completing the first year of his PhD in molecular genetics at the University of Toronto. In his words, “This grant would help greatly in supporting my continued education; it would allow me to dedicate my time to studying neurodevelopment with the hopes of finding treatments and cures for neurological conditions”. Our thanks to all applicants, and a special thank you to Jackson Mooney and his brother Jefferson, both who generously came up with the idea for the grant, and have committed to funding this on an annual basis.


Dystonia Families in Canada Support Program DMRF Canada recently received the much-needed funding to launch a support program specifically for parents of children and teens who have dystonia, as well as the children and teens who are affected by the disorder. There will be many projects rolled out as part of this initiative, including the development of several research guides, for parents of children with dystonia, as well as for teens. For now, we have launched a Facebook Group for parents of children with dystonia. If you are a parent of a child or a teen who has dystonia in Canada, you can join our Facebook Group – the link is available at: www.dystoniacanada.org/dystoniaparents “As the Mother of two little boys who suffer from dystonia, I know firsthand the importance of a strong, supportive community of parents in Canada, who understand the complex and unique challenges that children who suffer from dystonia face, throughout various stages of childhood. On behalf of the DMRF Canada, we are very grateful to the Allergan International Foundation for their generous support of this very important initiative” - Heather Connor, DMRF Canada Board Member and Mother

Jackson Mooney Dystonia Patient Grant 2018

Stay in Touch!

If you missed the deadline in 2017, note that we will be awarding this grant again in 2018 – interested individuals are invited to send a letter of interest to DMRF Canada from September 2017 – February 1, 2018. For more information, please visit www.dystoniacanada.org/ patientgrant

Sign up for DMRFC’s e-mails for the latest updates and announcements: www.dystoniacanada.org/newsletter. Like us on Facebook. Visit: www.facebook.com/DMRFC

From Baby to Teen: My Life with Dystonia By Sarah Anderson

My journey with Dystonia, though unknown at the time, began the very day I entered the world. As part of a complicated birth, I was born not breathing and for the first several minutes of my life doctors worked hard to clear my lungs. After an extended period, they were finally successful. However, it was a happy moment that would soon be accompanied by some life changing news. Just days after my birth the doctors informed my parents that I had suffered brain damage due to a lack of oxygen. My official diagnosis was Cerebral Palsy (CP), a non-progressive condition characterized by impaired muscle coordination and potential cognitive challenges. The only symptom that initially led doctors to believe I had CP was the fact my left hand was clenched tightly to my chest. As an infant, some of my milestones were either delayed or never met, which seemed to prove the accuracy of my diagnosis.

Sarah Anderson, DMRF Canada Teen Ambassador

“If there was one thing I could say to other teens living with Dystonia, it is to never give up on your goals. We may not always have control over our symptoms, but how we choose to live with them will forever remain in our hands. Always remember that whether positive or negative, every aspect of our lives helps to guide us on a journey to become who we are truly meant to be.”

It was not until my pre-teen years that I, along with my family, noticed significant changes in my symptoms and abilities. I could no longer use a walker, something that I had been capable of since I was a toddler. In addition, my tremors progressed throughout my body and my legs started twisting to the left. These worsening symptoms convinced doctors to change my diagnosis to Generalized Dystonia. With this new discovery, I embarked on a medical journey exploring a variety of medications in hopes to reduce and control the associated symptoms and pain. This was all new to me, as for the first twelve years of my life I had never taken medication in relation to my disability. Being a pre-teen at the time I must admit that I was more concerned about the future than I was about the present. One of the first questions I asked my doctor was, “How fast are my symptoms going to progress?” He responded, “Every case is different so there is really no way of predicting that.” Though I deeply craved a more promising response, I knew that I had to accept that some answers are only revealed with the passing of time. At that point, I also could not help but wonder if my dreams for the future were realistic. Despite living with a disability, I was always that typical child who wanted to grow up and attend university, pursue a career, and one day have a family. With that in mind, my first major goal was to graduate high school at age eighteen. However, the pain associated with my Dystonia hampered my ability to attend school full time. Suddenly it seemed like the task that I once saw as achievable was now slipping from my reach. Knowing my desire to succeed academically, in my seventh year some adaptations were set in place with the help of my family and my school. Through working on assignments at school as well as at home, I was able to keep up with the course material. (Continued on following page)


My Life with Dystonia (Continued). It seems so surreal that all this happened five years ago. Although I still cannot attend school full time, I am currently a grade twelve honour roll student on track to graduate at the end of the school year. In effort to further my passion for academics, I plan to attend university and pursue a career in education. As a small step toward this goal, I enjoy volunteering at Manitoba Children’s Museum. Through my Dystonia diagnosis I have also realized the importance of advocacy. In the fall of 2016 I became an ambassador for the Rick Hansen Foundation. As part of their school program, I do presentations to students expressing the importance of accessibility and the inclusion of those living with disabilities. If there was one thing I could say to other teens living with Dystonia, it is to never give up on your goals. We may not always have control over our symptoms, but how we choose to live with them will forever remain in our hands. Always remember that whether positive or negative, every aspect of our lives helps to guide us on a journey to become who we are truly meant to be. Sarah Anderson, Teen Ambassador for the DMRFC See Sarah’s story and other dystonia stories online: ttp://www.dystoniacanada.org/patient-stories Do you want to share your dystonia story? Email: info@dystoniacanada.org and your story could be featured in an upcoming newsletter.

Dystonia Moves Canada Working Together to Raise Awareness for Dystonia DMRF Canada will be leading the ‘Dystonia Moves Canada’ campaign for Dystonia Awareness month in Canada for September 2017 and beyond! This campaign has been launched in collaboration with the DMRF in the US to have maximum reach and impact, ultimately creating more awareness for the disorder in both Canada and the USA. Here’s how you can help: In Person: Help us reach those individuals who are struggling with dystonia and who still don’t have a proper diagnosis. Our aim is to reach them through promotion of DMRF Canada materials at doctor’s offices and other healthcare professionals across Canada. Order your free Dystonia Moves Me Volunteer Kit by emailing: info@dystoniacanada.org or call: 1-800-361-8061.


Online: Promote the campaign on social media and take part in the hashtag challenge. Use the following hashtags #dystoniamovesme and #dystoniamovescanada on Twitter, Facebook and Instagram. Visit: www.dystoniacanada.org/dystoniaawarenessmonth for details. One lucky individual could win a $100.00 gift card! Here’s how you can promote online: • Posting pictures or information with your hashtag on Facebook or Twitter. Make sure your own network knows what dystonia is. • Create online content in video or blogs – consider telling your dystonia story through short videos. Remember to include hashtags and tag DMRF Canada in everything you do online so that we can retweet, share, and re-post and find the hashtag challenge winner!

Dystonia Supporters on the Move! Every little bit helps. We wish to thank all our supporters who have taken steps to do more for the dystonia community in Canada. This year there have been many fundraising campaigns, walks, events, and fundraisers. Our thanks to the many volunteers and donors who have helped DMRF Canada to raise funds for our cause… Florabunda Inc Provides Funding for Dystonia We are excited to announce an exciting new partnership with Florabunda Inc, Leslieville’s Flower Market. Florabunda is listed as one of BlogTo’s Best Florists in Toronto!

This year, during Dystonia Awareness month (September 1 to September 30, 2017) Florabunda will be donating 20% from every floral sale when the code Dystonia17 is used for orders to DMRF Canada. Please visit www.dystoniacanada.org/florabunda for how to order and more information.

Chuck’s Run for Dystonia We did it again! This year, thanks to the generous support of our participants, donors, and sponsors, we raised over $70,000 and engaged over 350 participants, supporters and volunteers. Special thanks to our 2017 Ambassador Alicia McGill, and her employer AlertDriving for their support. We’d also like to thank our Platinum Sponsor Merz Pharma Canada Ltd. and our Gold Sponsor Ipsen Biopharmaceuticals Canada Inc. for their generous support.

2017 Ambassador Alicia McGill, with Chuck’s Run Chairman Bill Saundercook lead a team of over 250 walkers and runners at this year’s event 10

Freedom to Move Walk Events In June 2017, the Hamilton Support Group, the Golden Triangle Support Group, and the Sudbury Support Group organized and participated in walk events in their communities! In total, these events raised over $30,000 for dystonia research and support programs. It was a very special event in Sudbury, as the group was celebrating their 20th Walk event! A special message from Mary Guy, Sudbury Support Group Leader Sudbury & District: Wow! You did well!! Amazing, actually! After the walk Dwayne and I got more pledges to topple us over the $20,000 goal that I set for our 20th anniversary. Speaking of Dwayne, he outdid himself this year, raising $10,825. Since 2001, Dwayne has raised $91,490.18 for dystonia medical research. Pauline, who stepped into my shoes at the last minute, reported that Dwayne works diligently for 3 to 4 months reaching out to about 300 people, getting pledges and promoting awareness. Well done Dwayne!! I am very proud of the small dedicated group of about 32 people who came out and walked. A very big thank you to everyone who sponsored our walkers and everyone who helped in making the walk such a success.

Scotiabank Charity Walk Events

Vesey’s Flower Fundraising

Our Montreal Support Group, Dystonie-Partage, and our Vancouver Support Group participated in the Scotiabank charity walk events in their communities for the first time. We were thrilled to be able to expand our reach (and awareness) in these communities and we look forward to doing even more next year. Plus! Later this fall, Executive Director Stefanie Ince will be putting a team together for the upcoming Toronto Scotiabank Charity Challenge, to raise more funds for DMRF Canada. You can donate or join Stefanie’s team by visiting www.dystoniacanada.org/scotiatoronto

Gardening is a wonderful and relaxing activity that you and your whole family can get involved with. This year DMRF Canada will be partnering with Vesey’s Flower Fundraising program to provide you with another avenue to help support dystonia research. The flower fundraising programs allows you to purchase bulbs and seeds through out the year. 50% of the purchase proceeds go directly to us at DMRF Canada to help with on going research funding. For more information visit: www.dystoniacanada.org/flowerfundraising.

Dystonia Support Group, Dystonie-Partage, walking to raise awareness and funds for DMRF Canada through the Scotiabank charity challenge.


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Help to Defy Dystonia - Double your Donation Today Casey Kidson continues to ‘Dyfy Dystonia’ in her ongoing mission to raise awareness and funds for dystonia throughout 2017. Since the beginning of the year, Casey has participated in over 30 events, including Chuck’s Run for Dystonia. To date, Casey’s campaign has raised almost $5,000 through many fundraisers, including her ‘Evening to Defy Dystonia’, which took place on Saturday, July 15th. Now you can help Casey do even more! Merz Pharma Canada has generously agreed to match any donations made towards

DMRF Canada 550 St. Clair Ave West, Suite 209 Toronto, ON M6C 1A5

Casey’s campaign up to a maximum of $8,000.00. That means any donation you make towards Casey’s campaign in 2017 will be matched! Please help Casey to defy dystonia, so that we can raise more awareness, fund more research and help more Canadians’ suffering. To donate to Casey’s campaign, simply fill out the form below and select, “Yes, I want to dyfy dystonia”. Or, to make your donation online, visit www.dystoniacanada.org/casey

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DMRF Canada Fall 2017 Newsletter  

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