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2017 is the first year that The Parkinson’s Policy Forum was hosted by The Michael J. Fox Foundation. Formerly known as the PAN Forum, members of the Parkinson’s community, Parkinson’s disease organizations, and lawmakers meet once a year to discuss Parkinson’s patient needs and policies. The event concludes with “Hill Day,” a full day of meetings on Capitol Hill.

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The 2017 Parkinson’s Policy Forum in Washington, DC

It was my first time at the Policy Forum, and I was truly inspired. The Michael J. Fox Foundation event was orchestrated to perfection.

Honorable Jack W. Buechner, former U.S. Congressman in Missouri, District 2 and guest speaker at the Forum saluted the 200 participants with the proclamation “you are lobbyists.”

I thought I was an advocate, so I checked on the definition. The goals of advocacy and lobbying are similar, but the processes are different. Advocacy is attempting to cause political action with the aim to influence decision makers. Lobbying is advocacy, but it goes a step further because it refers to influencing the government and its leaders to change legislation. We were there to request funding, and maintain some existing provisions before they are changed.

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A Southern California contingent of people with Parkinson’s disease joined us to chat with Rohini Kosoglu, Legislative Assistant for Senator Kamala Harris

To prepare for training, each participant was asked to compose a 90-second elevator speech about their association with Parkinson’s. Why were we there? What had we done to advocate for the disease? What did we want from the lawmakers?

The homework was challenging due to the brevity of the assignment, and the self-analysis required. I wondered how I could appear conversational knowing that I might be guided off course by a comment or question from the lawmaker. My focus was health care, because our recent Parkinson’s Women Support petition of 150 signatures asks lawmakers to keep basic provisions that exist in the Affordable Care Act (ACA.)

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Robin Elliot, CEO Emeritus, Parkinson’s Disease Foundation, and Deborah W. Brooks, co-founder and executive Vice Chairman of The Michael J. Fox Foundation for Parkinson’s Research (MJFF)

We had a day of training from a variety of experts who spoke about the art of persuasion. The training workshop ended with an awesome pep talk from Michael J. Fox who gave us the confidence that we could make a difference to legislation just by telling our stories.

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Dave Iverson, PBS and NPR radio/film journalist and founding member of MJFF Patient Council, Caitlin Jurman, MJFF Program Officer, Steve and Kae Spencer, and support dog Nandi outside the office of Congresswoman Anna Eshoo

My group included Steve and Kae Spencer from San Martin, California and their support dog, Nandi, Caitlin Jurman, MJFF Program Officer, Community Engagement, and Dave Iverson, KQED radio/film journalist and Parkinson’s spokesperson.

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Steve, Kae and Nandi Spencer on their way to their next meeting with Congress

We navigated the long buildings and halls of the Capitol to reach Congresswoman Anna Eshoo, District 18, CA, Congresswoman Zoe Lofgren, District 19, CA, Senator Dianne Feinstein, and Senator Kamala Harris.

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Rachel K. Fybel, Legislative Assistant for Congresswoman Anna Eshoo outside her office

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 care giving (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, and left our petition at each visit. Caitlin gave each lawmaker a packet of MJFF information.

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Are these assistants waiting for congress members to finish working on legislation?

Time will tell what the Parkinson’s funding will be after the budget is hammered out in Congress. Whatever the outcome is, I admire the people with Parkinson’s who made the journey to Washington DC this year to tell their stories and present their requests to Congress.

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A tribute to Muhammad Ali outside the door of Kentucky Representative John Yarmuth

As Ted Thompson, JD, Senior Vice President of Public Policy for The Michael J. Fox Foundation said “Never burn bridges, and don’t give up on people. You don’t know where your relationship will go.”

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A  glimpse of The Hill as Congress prepared for the President’s first speech to Congress

Who knows how people with Parkinson’s disease can impact our relationship with Congress members in the years to come!


About Parkinson’s Women Support: The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen

8 thoughts on “From Advocate to Lobbyist for Parkinson’s

  1. Pingback: Odds & Ends – Twitchy woman

  2. Pingback: Lobbying at the hill – defeatPARKINSONS

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