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.
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.
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.)
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.
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.
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.
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.
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.
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.”
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