Beyond My Battle Strategic Plan 2021

BEYOND MY BATTLE

S T R AT E G I C P L A N

Beyond My Battle

S T R AT E G I C P L A N

TABLE OF CONTENTS 1 ABOUT US

2 V I S I O N , M I S S I O N , A N D VA L U E S

3 FORCES EFFECTING OUR WORK

8 S T R AT E G I C G O A L S

9 2 0 2 1 P RO G R A M S A N D E V E N T S

ABOUT US Beyond My Battle (BMB) is a 501(c)(3) nonprofit providing educational resources and emotional support to those seeking a more resilient and compassionate approach to life with illness or disability. Our services and resources are designed for both people with life-altering medical conditions and their care partners.

Founded in 2017 by Martel Catalano and Nell Pritchard, both of whom carry the lived experience of having rare diseases and disabilities, BMB employs mindfulness, awareness, and selfcompassion as core strategies in navigating the emotional and psychological landscapes of illness, disability, and caregiving.

Because many in our community were already vulnerable and isolated prior to COVID-19 Beyond My Battle has always operated within the digital space; this allowed us to pivot quickly from the onset of the pandemic toward meeting new and increased demands for online programming. We are proud to have been a steady source of support

for our community, able to meet their needs through a growing our roster of resources, to include our e-toolkit and e-books, digital library, the Unfixed Podcast, webinars, and professionallyfacilitated virtual support groups. With the growing demand for digital connection due to growing isolation and mental health challenges, we expanded our online offerings at the start of 2021 through the addition of two monthly meet-ups: Writing for Expression and Compassion and Watercolor for Calming and Creating. We will continue to run our annual fundraiser, Art with Heart and Hope, in a virtual or hybrid in-person/virtual format to be available to all.

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VISION, MISSION, AND VALUES Beyond My Battle helps individuals and caregivers reduce the stress of serious illness, rare disease, and disability through emotional support and educational resources rooted in mindfulness, awareness, and compassion.

Drawing on values of empowerment, community, humility, curiosity and acceptance, we envision BMB serving as a unique model for reducing stress and improving the emotional and interpersonal wellbeing of those affected by disability and disease.

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FORCES EFFECTING OUR WORK Vast Population Impacted

According to data from the US Census Bureau and Centers for Disease Control, an estimated 155 million adults in the United States live with a chronic illness, 103 million manage two or more chronic diagnosis, and 61 million live with a disability.

Additionally, an estimated 25 million adults, teenagers, and children in the U.S. have a rare disease, defined as a condition affecting fewer than 200,000 people worldwide.

This toll is significant, with the CDC reporting that health care costs associated with such conditions exceed $3.4 trillion each year in the United States, a figure which does not account for losses in productivity and wages, treatments and medications postponed or forgone because of expense, or the social and emotional cost of life with disability or disease.

155 MILLION ADULTS

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FORCES EFFECTING OUR WORK Stress and Diagnosis

The onset of disability or life-altering diagnosis is undeniably traumatic, leading to increased mental and physical stress for both patients and their care partners.

As documented by countless studies, life-altering medical conditions create a unique and vast array of obstacles for both patients and caregivers – managing medical appointments and treatments, navigating new healthcare systems, and dealing with the physical symptoms of ones’ condition pile on top of pre-existing financial, occupational, social, and environmental stressors.

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UNIQUE AND VAST ARRAY OF OBSTACLES

Health Implications of Stress

Increased stress is directly connected to compromised health and relationships. Chronic stress can amplify the symptoms of disease (i.e. chronic pain, insomnia, high blood pressure), generate additional illness (i.e. ulcerative colitis, heart disease, stroke), and lead to burnout and reductions in self-care.

Of particular concern, the impact of stress on the immune system can include heightened susceptibility to infection and illness, as well as slower rates of healing.

The impact of stress on mental health is equally dire.

Depression, anxiety, and suicidal ideation can be initiated and exacerbated by stress, along with irrational, illogical, and emotionally unregulated behaviors that may damage important relationships, particularly those crucial to support and care. Additionally, “compassion fatigue,” a common effect of stress among caregivers, has been linked to less effective delivery of care.

CHRONIC STRESS CAN AMPLIFY THE SYMPTOMS 5

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FORCES EFFECTING OUR WORK Mindfulness in Healthcare

More than 50 years of research have shown the positive impacts of engaged coping strategies such as mindfulness on health and health outcomes. It is a growing field in medicine, supported and implemented by doctors, hospitals, and universities around the world.

Improved emotional regulation is a key benefit of mindfulness-based practices. Greater ability to notice and defuse negative emotions can improve moods, moderate stress, decrease anxiety, facilitate post-traumatic growth, and increase feelings of connectedness to others.

Additionally, emotional regulation can help people cope with the feelings of depression, shame, isolation, and anger which often accompany life with a chronic disability or medical condition.

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IMPROVING EMOTIONAL REGULATION

Digital Health & Community Because disease and disability often create challenges around mobility, accessibility, and social connectivity, virtual communities for patients and caregivers are popular sources of support.

People have grown increasingly comfortable accessing information, connecting, and receiving education online, with more than a third of consumers using digital space for conversations about health. The shift online since COVID-19 has created more opportunities for more online-based groups, especially for those with greater health risks.

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STRATEGIC GOALS Beyond My Battle is just three years old and we’re proud of what we’ve accomplished. Our work is far from done. Looking to the future, we have identified the following goals and objectives as necessary to our growth and development as an organization and, most importantly, our ongoing ability to support and serve the BMB community.

Community Impact Goals Diversify programs and program delivery methods.

Expand target audience to include healthcare professionals.

Establish partnerships to expand reach and impact.

Grow participation in the BMB community.

Capacity Building Goals Increase visibility and brand recognition.

Diversify funding streams with a focus on fee-for-service initiatives to build sustainability.

Implement specific strategies and metrics to build Board, staff, and organizational capacity.

Improve ability to implement metrics for our programs and services.

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BEYOND MY BATTLE 2021 PROGRAMS AND EVENTS Continue

E xpa n d

Virtual Support Groups

Rare Disease Workshops

Podcast

Emotional E-toolkit

Blog

E-books

Resource Library

Art Show

GROW Creative Meet-ups Outreach Partners

COVID Battle Kit Online Community

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BEYOND MY BATTLE 2021 PROGRAMS AND EVENTS Continue

Virtual Support Groups BMB has offered live, peer-facilitated support groups since April 2020. These provide participants an opportunity to explore topics related to illness and disability from an emotional perspective, rather than the comparative, procedural perspectives that often arise in forums focused on single medical conditions. Two groups are offered per week, one for those living with illnesses/disabilities and one for caregivers. Groups have reached over 300 individuals since their launch. In 2021 we wish to maintain our online support groups, adding a second illness/disability group if attendance grows to warrant it.

Podcast The “Beyond My Battle Podcast,” first released in January 2020, pivoted and relaunched in December 2020 as the “Unfixed Podcast.” Now produced in collaboration with the team behind the awardwinning docu-series, Unfixed Media Productions. In its new format the show pairs one person living with chronic illness with another who is either a professional in a relevant field or facing their own unique battle for a conversation about the creative ways each contends with adversity. Each episode draws on qualities of curiosity and compassion to demonstrate that we live can lived powerfully despite – or because of – our challenges.

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Blog The BMB blog is an interview-based series that calmly and compassionately holds space for members of the community who want to share their experiences with illness and disability. New entries are posted nearly every month.

Resource Library The BMB library exists on our website as a resource hub of books, videos, and care products recommended for, or by members of, the BMB community. Download or purchase links are provided with each item.

COVID Battle Kit The BMB Covid-19 Battle Kit is a collection of free and donation-based resources for staying calm and taking care during the uncertainty wrought by the pandemic. Organized into six categories, these resources provide up-to-date information about the disease along with materials on reducing stress, staying connected with friends and family, and cultivating mental, physical, and creative well-being.

Online Community BMB began in 2017 as a private Facebook group for patients and caregivers looking to connect with others about living mindfully with health-related uncertainties. To date, we have 1,696 followers.

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BEYOND MY BATTLE 2021 PROGRAMS AND EVENTS Expa n d

Rare Disease Workshops In 2020, we were presented with an opportunity to develop two workshop series for the Upstate New York Chapter of the ALS Association. The pilot project was initiated and sponsored by Mitsubishi Tanabe Pharma America. Each workshop series features three 45-minute lectures about stress and self-regulation specific to a) ALS caregivers and b) patients living with ALS. Workshops take place online on three consecutive weeks.

In 2021, we are looking to expand the ALS program to additional chapters within the ALS Association, starting with a joint workshop for all the chapters within the Northeast, then branching out to other regions. We foresee this being a model that can generate substantial revenue from sponsors and can be rolled out to other rare diseases. In 2021, we hope to begin connecting with personnel at other rare disease organizations and appropriate pharmaceutical sponsors, with the possibility of launching workshops for them in late 2021/early 2022. In 2021 BMB will explore opportunities to develop resources for additional rare disease organizations. Following the template of the ALS patient and caregiver workshop series, BMB will look to connect with additional rare disease organizations and appropriate pharmaceutical sponsors to provide this program.

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Emotional E-toolkit The BMB Emotional E-Toolkit is a free, accessible collection of fundamental strategies for reducing stress, tailored for those affected by illness or disability. There are currently five tools in the kit, covering Relationship; Breath; Nature; Movement; and Meditation. Knowing that art-based interventions are widely recognized as an effective means of reducing physiological and psychological stress, we will be adding a sixth Art Tool to the kit in 2021 through funding from the Arnold Cogswell Health Care Fund.

E-books Our E-book collection takes a deeper dive into practices for managing emotions and stress when living with, or caring for someone with illness or disability. Two books have been already released: Moving Beyond Your Battle: How to Find Calm Amidst the Stress of Illness and Disability, and Becoming a Source of Calm: How to Regulate Yourself and Your Loved One with an Illness or Disability.

In 2021, BMB will expand its E-book library with two additional titles through funding from the Arnold Cogswell Health Care Fund:

Grieving the Imagined Life: Managing and Making Peace with Loss for Patient and Caregiver Being Your Own Advocate: From Societal Stigmas to Self-Compassion

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BEYOND MY BATTLE 2021 PROGRAMS AND EVENTS Ex pa n d Art Show: Art with Heart and Hope Launched as a fundraising event in 2019, Art with Heart and Hope brings together the healing practices of art and storytelling to celebrate those who channel complex feelings about life with illness, disability, or caregiving through creative expression.

In 2021, COVID permitting, Art with Heart and Hope will move to a larger venue, allowing us to exhibit more works of art while also accommodating a larger audience.

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GROW Creative Meetups We surveyed our community in 2020 to find out what types of opportunities and activities they would like for us offer. Overwhelmingly, respondents said they wanted more opportunities to socialize online, and that art activities would be welcome.

Based on this, BMB will be launching two online Creative Meetups in February 2021. Harper Spero will facilitate monthly writing groups, and Chad Leonard will lead monthly watercolor groups. Groups will meet online for 60-90 minutes and provide a space for expression, exploration, and connection.

Funding for this new program will come from the Arnold Cogswell Health Care Fund.

Outreach Partners In 2021, BMB will seek to cultivate relationships with individuals and institutions who are able to assist us in expanding awareness about BMB and its services. A major emphasis will be put on outreach efforts to doctors, healthcare providers, therapists, rehabilitation centers, etc. in the Capital Region.

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BEYOND MY BATTLE P.O. Box 161 Saratoga Springs, NY 12866 info@beyondmybattle.org Beyond My Battle™ is a 501(c)(3) nonprofit organization, EIN 82-3338879 © 2021 BEYOND MY BATTLE