So I channeled this anger and frustration and yes, sense of urgency, to Washington, DC, to attend the PAN Forum February 27 –March 2, 2011. (PAN, or Parkinson’s Action Network, is the unified voice of the Parkinson’s community advocating for better treatments and a cure. In partnership with other Parkinson’s organizations and a powerful grassroots network, PAN educates the public and government leaders on better policies for research and improved quality of life for people living with Parkinson’s). I was very fortunate to land a scholarship to the Forum, and, armed with little more than a Face book Page to serve as an information/resource/network support, and a sense that surely there were others like me who needed a voice to communicate their own pain, flew to DC, to spend three days at the historic and beautiful Omni Shoreham Hotel.
What I discovered there was nearly as life-altering as my diagnosis in 2002. I met other delegates from Washington State as we were educated for two days on the PAN agenda (policies affecting PD) as well as the positive and inarguably indelible impact of advocacy, or “telling your story.” I was the newbie on “Team Washington” which consisted of veterans Tom Ryan of Bainbridge Island, Carey Christensen of Stanwood (both, like me, diagnosed with Young Onset Parkinson’s Disease) and the new Executive Head of the NWPF, Colleen Crowley. I was impressed with the intelligence, dedication, and depth of knowledge of Tom, Carey, and Colleen.
After two days of fascinating and inspiring education from various panels (two in particular contained Dr. Tom Montine, Interim Department Chair of Pathology at The University of Washington) I became aware that there many, many bright minds and lives seriously affected by this disease, and many, many bright minds working on our behalf. The very knowledgeable and articulate CEO of PAN, Amy Comstock Rick, and Deputy CEO John Schall served as moderators. The first afternoon was webcast on PAN (you can view it if you click on PAN’s website:parkinsonsaction.org) and Senator Mark Udall spoke on behalf of the Surveillance Bill(S.425) which he was reintroducing to the 211th Congress the following day. (This bill had passed in the House but got stuck in the Senate last year.) The logistics went without a glitch and coordinated smoothly by Hayley Carpenter, Director of Outreach for PAN who seemed to be everywhere, every time.
On Wednesday, Colleen’s birthday, we spent the entire day in meetings on Capital Hill. I witnessed truly the power of our democracy in action, and developed a new respect for our first amendment, the right of all to speak and be heard. Our very long day began with appointments with our elected officials from the state of Washington: Senators Patty Murray and Maria Cantwell, Representatives Jim McDermott, Norm Dicks, and Jay Inslee. We left written materials in each office.
As we met with our Congressional members’ staffs, it was clear that we made a great team despite very little practice together, and got better as the day went on. Carey’s passionate breadth of knowledge, Tom’s quiet yet strongly intelligent presence, and Colleen’s calm ability to summarize and speak for the people of the Pacific Northwest who had no voice, all combined to make us a daunting group. We added some critical talking points: that Parkinson’s Disease is very expensive in terms of potential income lost due to disability, that aging Baby Boomers will be tapping into the Health Care system, and that PD is a bipartisan issue (no one, be it Democrat, Republican, Tea Party, Progressive, or Independent is exempt from the ravages of the disease.) By the end of the day, we felt exhausted yet exuberant, knowing that we had secured either continued support or increased support for the following PAN legislative policies:
1. Continue to support funding for NIH grants to fund both basic and translational research, including monies set aside for the Cures Acceleration Network, or CAN, to more quickly move scientific discoveries from the lab into the next generation of drugs and treatment therapies.
2. Support the National Neurological Diseases Surveillance System Act, which would establish a national database to collect and analyze information on neurological diseases, including Parkinson’s Disease and Multiple Sclerosis, for researchers. (we still do not know how many of us are challenged by PD in this country: estimates are over 1.5 million, 35,000 in Washington State, but these are just estimates.)
3. Continue to fund, at its current level, the NETPR (Neurotoxin Exposure Treatment Parkinson’s Research) grant funding through the DOD. Nearly 80,000 of our veterans are being treated for Parkinson’s Disease and some of the latest evidence is finding a causal relationship between exposure to Agent Orange and other biotoxins, and PD.
4. The Senator or Congressperson joins the Parkinson’s Disease Caucus, if not already a member.
We discovered that most of our congress people were onboard and in agreement, but the tight financial/budget restrictions will make it difficult, yet imperative that we not lose the monies already granted. The proposed current budget funds NIH at the same level of funding as it was In 2003, but President Obama’s proposed budget for 2012 increases these funds by 1.6 billion dollars. We also felt we “struck gold” when we discovered a staff member of Rep Norm Dicks ( the highest ranking leader in the House Appropriations Committee) had done some biomedical research directly related to PD as a former medical student, and whose grandparents had suffered from PD. We felt listened to by all, and in this era of health care reform and tightening budget restrictions, feel that our representatives will do their best to keep people with neurological disorders interests in the front of their minds. I plan on “following up” via email to keep reminding them.
I learned, or reaffirmed, the” power of one”: that one voice can make a difference. That despite all of our country’s challenges, it is still a beautiful place of democracy, as wonderfully messy and chaotic as that may seem at times. That there are many talented, intelligent, and articulate people in this country who feel as passionate about finding a cure as quickly as we are, and they are working diligently on our behalf.
And I learned this: When you become an advocate for Parkinson’s Disease, you cease being its victim.
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