From L to R: PAN Virginia Assistant State Director David Chedester; PAN CEO Amy Comstock Rick; NINDS Director Story Landis; and IHS Global’s Tim Dall.
PAN hosted an educational briefing on in the Rayburn House Office Building on Capitol Hill entitled "Parkinson's Disease 101" on Tuesday, April 23. Congressional staffers and representatives from health community organizations attended and heard from the following speakers:
Amy Comstock Rick, J.D., Chief Executive Officer, Parkinson’s Action Network
Amy gave a brief overview of PAN and its policy priorities as they relate to the Parkinson’s community.
Story C. Landis, Ph.D., Director, National Institute of Neurological Disorders and Stroke at the National Institutes of Health (NIH)
Story spoke about Parkinson’s disease, the genetic and environmental factors surrounding the disease, and how NIH funds research toward better treatments and a cure.
Timothy M. Dall, M.S., Managing Director, Healthcare Consulting at IHS Global
Tim covered highlights from a recent study he authored, called "The Current and Projected Economic Burden of Parkinson's Disease in the United States ."
David Chedester, Virginia Assistant State Director, Parkinson’s Action Network
David shared his personal story of being diagnosed with Young-onset Parkinson’s at age 27, and how he copes with the disease in his day-to-day life.
Briefings like this are an important way for congressional staff to learn about Parkinson’s disease and why NIH research funding is so critical in the fight for a cure. For David Chedester, being in Washington to talk about his experiences with Parkinson’s was something new, exciting, and very personal.
David is a 29-year-old pharmaceuticals sales representative from Lynchburg, Virginia who was diagnosed with Parkinson’s disease at the age of 27. He started experiencing his first symptoms at 18 just after graduating high school in Middlesboro, KY. We spent a few minutes with him just before the briefing to get his insights on why advocacy and education around Parkinson’s disease is so important.
PAN: David, tell us why you are on Capitol Hill today.
David: I am here to tell my personal story: what my life was like before I was diagnosed with Parkinson’s, and what it has been like since then.
PAN: Why is it important to tell your story on Capitol Hill?
David: The people listening to us this morning work for the representatives and senators, and we need their help to influence decisions that will hopefully lead to increased NIH funding and eventually finding a cure for Parkinson’s.
PAN: Tell us a little bit about what you have been doing in April for Parkinson’s Awareness Month.
David: I ran a small fundraiser in Roanake, VA where we were able to raise $1,000, and next year we are hoping to do something bigger and better. I’ve spoken at multiple support groups and wear my PAN lapel and my Michael J. Fox pin everywhere I go. April is really my month to try to speak at as many events as I can.
PAN: We know you do pharmaceutical sales and talk to a lot of people every day through your work. Do you also talk and advocate about Parkinson’s while you are out doing that?
David: I do now. A few years ago it was not something I proactively said. But now the doctors, nurses, and office staff all know that I have it which is good because they see that I have a positive attitude and outlook on life, and hopefully that is able to have a positive effect.
PAN: Where do you see yourself in 5 years?
David: I hope to become a public face for Parkinson’s disease, not just locally but worldwide. Because even five years from now, 34 years old is still insanely young to be someone with Parkinson’s disease. So, that would be sixteen years living with the disease. I want to keep educating and fighting five years, ten years, and many, many more years from now.
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Date originally posted: April 24, 2013.