1. Why did you become a Health Activist? Tell us your Health Activist story!
My mother-in-law became ill in the early 1990’s with a form of multiple system atrophy, a rare, serious neurodegenerative disease which took her life in 1998. Very little was known about the disease back then and my own search for more information about it led me to help others who were also seeking answers. I’ve been a leader of online support groups since 1995 where I have helped countless patients and families find information and support. I have also developed and maintained close connections with researchers of the disease. In 2010, March became multiple system atrophy awareness month and I created my own website www.MSAawareness.org to share information on the disease and gather links to resources in one handy spot. At my urging a bill was introduced to congress last year declaring support for March as MSA awareness month on a national level. https://legiscan.com/US/bill/HR518/2013 Since 2013 I have been a director of the board of the Multiple System Atrophy Coalition www.multiplesystematrophy.org a US based non-profit dedicated to funding research leading to a treatment or cure. Counseling patients and families, educating healthcare professionals and advocating with government are also part of their mission.
2. What are your goals for Health Activism in 2015?
Personally my passion is to advance science and research for multiple system atrophy. As co-chair of the research committee of the Multiple System Atrophy Coalition I have driven the research grant program through three research grant cycles. We have designated over $700,000 to MSA research projects to date. I became a member of the Movement Disorder Society this year and plan to attend their annual conference in San Diego in June. I have already made some significant connections this year with new researchers who want to study MSA, with biotech industry leaders and with other non-profits who want to collaborate. Every connection I make leads to an exchange of ideas and it also becomes an opportunity to introduce researchers to one another so they can create collaborative projects aimed at this disease. This is very fulfilling work and is a tremendous encouragement to me to keep moving the MSA agenda forward.
3. What awareness event or effort are you most excited about in your condition?
The annual conference for multiple system atrophy patients and families will take place during the weekend of October 2nd in Seattle, Washington. This coincides with World MSA Day on October 3rd. We are planning to roll out a brand new awareness campaign that we hope will strike a chord with patients, families, friends and ultimately the general public. Even if you aren’t personally affected by the disease you will be able to relate if you have ever loved someone who was ill. We think this campaign will be emotionally powerful and very effective in telling the MSA story.
4. If you could tell others a few things about your condition and your community, what would you want them to know?
Multiple system atrophy could strike anyone at any time. Each of us is equally as likely to be affected. There is no treatment, we don’t know the exact underlying cause, we do have hope through research for a treatment to be developed but this can not come soon enough for thousands who are currently suffering. We need the word to spread that this disease exists, we need funding for research and we need help for patients and their families to cope right now.
5. What advice would you give to patients and/or caregivers just beginning their Health Activist journey?
Until this disease struck someone I loved dearly I never knew that I had a voice to make a difference. That voice is inside every person. Each of us chooses whether to speak up or stay silent and let the status quo prevail. We need many more voices speaking up to tell the world about the need for better health care or more research for devastating diseases. Whether they are patients, caregivers, family, friends, neighbours or co-workers, every voice can make a difference. Choose to speak up now and change the world for those who struggle with health conditions.