How to Advocate for the Parkinson’s Community

Samantha Felder avatar

by Samantha Felder |

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The word “advocacy” alone can send people running for the hills. I’ll admit, when I first decided to advocate for those of us with Parkinson’s disease, I was a little scared. Because I’m only 31 (and look 16!), I didn’t think anyone would take me seriously, and I certainly didn’t want others to feel sorry for me.

Over the years, I’ve realized that many young people are afraid to get out there and share their story. They may fear losing their friends, losing their jobs, and facing the unknown.

Despite my own fears, I have used my voice to share my story and the stories of others in the hope of making a difference in the Parkinson’s community. And I’m glad I have.

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Following are just a few of the countless ways to advocate for people with Parkinson’s.

Contact your government officials

If you’re in the U.S., you can write letters to your local congressional representative about the changes you’d like to see. As constituents, we can explain why certain policy changes are needed, and request increased funding for disease research.

You could even take it one step further and ask to meet with your representative in either your home state or in Washington, D.C. Telling them your story can make a big impact.

Over the past three years, I’ve had the opportunity to participate in the Parkinson’s Policy Forum (PPF), an annual event hosted by the Michael J. Fox Foundation (MJFF). Hundreds of advocates, including researchers, patients, and caregivers, come together over several days to educate government officials on Capitol Hill about the reality of living with Parkinson’s.

In 2018, a Labor, Health and Human Services, Education, and Defense spending bill signed into law included $5 million in funding for the U.S. Centers for Disease Control and Prevention’s National Neurological Conditions Surveillance System, a database that will collect valuable information about neurological diseases, including Parkinson’s. This funding was adopted thanks in part to efforts by the Parkinson’s Policy Forum. As Mary Chapman reported for Parkinson’s News Today, “The new law … will help refine disease research and make care more accessible.”

Participate in fundraising efforts

Another way to advocate is to either host or participate in a fundraiser to increase Parkinson’s awareness in your community and raise money for research. Various organizations and nonprofits host fundraisers throughout the year. The MJFF website lists several ways you can get involved with these efforts.

In 2013, with the help of my parents and a number of generous donors and participants, I started an annual fundraiser called Punt Parkinson’s With the Pack. The event, which takes place in Wisconsin, combines a golf outing and a Green Bay Packers watch party. We have raised over $75,000 for the Wisconsin Parkinson Association.

Each of us has a unique story to tell, and I encourage you to share yours. Your story can make a bigger impact than you might imagine. When I was diagnosed 10 years ago, I never thought that thousands of people would know my story, whether through television appearances, news stories, interviews, or this column.

I am a normal (sort of) Midwestern girl who is overcoming the obstacles in her way. If I can advocate, I believe you can, too! Remember to embrace the shake and keep moving forward.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.


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