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Advocates Share Their Experiences on Capitol Hill

Advocates Share Their Experiences on Capitol Hill

Advocates from the state of Georgia at the 2017 Parkinson's Policy Forum.

Over 200 individuals took to Capitol Hill last month to advocate in support of our community as part of the 2017 Parkinson's Policy Forum. People from across the country gathered in Washington, D.C. for two days of expert discussions on the current state of politics, advocacy best practices and policy issues impacting people with Parkinson's disease (PD) and their care partners. (View the panels.) On the final day of the Forum, advocates conducted nearly 200 meetings with members of Congress -- covering 35 percent of all Hill offices -- to educate them on the needs of the PD community.

Four Forum attendees recently shared their experiences in personal blogs. Below, we share excerpts from these posts, highlighting the critical role advocates play in driving change.

Darcy Blake: From Advocate to Lobbyist
Darcy is the director of communications and marketing at Menlo College and the co-leader of the Parkinson's Women's Support Group in the Bay Area.

"We spoke to legislative assistants who were well versed about Parkinson's disease. Our group described different aspects of the funding we sought. In our case, Steve focused on National Institutes of Health (NIH) funding; Kae discussed caregiving (RAISE Family Caregivers Act); Dave spoke about the Food and Drug Administration (FDA), the Department of Defense program (DoD), the Centers for Disease Control (CDC) and the 21st Century Cures Act; and I focused on the ACA [Affordable Care Act]."

"Whatever the outcome is, I admire the people with Parkinson's who made the journey to Washington, D.C. this year to tell their stories and present their requests to Congress."

View Darcy's full blog.

Gary Rafaloff: My Experience on Capitol Hill
Gary is a research and clinical trials ambassador with MJFF, as well as a policy advocate. Currently, Gary is acting as a patient representative on a clinical trial steering committee.

"When I was first approached by a representative of the Foundation and asked to participate in the Forum as an advocate, I was reluctant to commit. Given the nature of the political environment in the United States the past year, I was loath to get involved in anything that would put me in the middle, and I didn't have much confidence in being able to accomplish anything in Congress. However, as I reflected on the issues we would be focusing on, I realized they are really bipartisan and would be helpful to anyone dealing with a chronic illness. Parkinson's, like other chronic diseases, does not discriminate. It impacts both Democrats and Republicans, men and women, black and white, young and old. There are no boundaries and, once diagnosed, we all have the same needs and concerns."

Gary's blog is posted to PatientsLikeMe (subscription required).

Larry Kahn: Meet Your Metro Atlanta Advocates
Larry is a retired tax attorney, novelist and person with Parkinson's. He is the co-founder and president of PD Gladiators, a Georgia nonprofit dedicated to combating PD with vigorous and varied exercise.

"We see our role in the community as advocates for 'living well' issues, steps the community can take to help people with PD (and their families) stay healthy, bridging the gap until researchers can find a cure. Ellie, who facilitates the Dunwoody support group, told the legislators' staffs about the concerns of caregivers and how they could possibly be addressed by Congress passing the (RAISE) Family Caregivers Act. I emphasized that those of us with PD did not want to become burdens on our families and the health care system; we are working hard to keep ourselves fit until researchers find a cure, but we need Medicare (and private insurers) to eliminate caps on physical therapy and fund community-based exercise programs adapted for PD to support our fight."

Learn more about Larry's experience on the Hill.

Maria de Leon: Capitol Hill Preparation
Maria is a movement disorder specialist, patient advocate and person with Parkinson's. She authored a book titled "Parkinson's Diva: A Women's Guide to Parkinson's Disease."

"I feel very blessed to be part of a greatly empowered group of individuals from all around the country, brought together by the generosity and leadership of [The Michael J. Fox Foundation]. We all came collectively to D.C. committed to advancing the cause of Parkinson's disease which affects nearly 2 million people nationally. Myself and others are thrilled to speak to Congress to ensure a better future for our families and for all those of us who live with PD. We are all advocating for a chance to have the best quality of life possible and to remain productive members of society."

Continue reading Maria's story.

Everyone has the power to advocate from their own homes. Visit to see how you can make your voice heard on policy issues impacting the PD community.

Interested in other ways to get involved? The Foundation's new Community Engagement team helps the PD community navigate opportunities to proactively take part in the Foundation's mission. Read about the team's work.

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