Guest blogger David R. Higgins, PhD, is a Parkinson’s Patient Advocate and a CIRM ICOC board member.
Two national Parkinson’s organizations have decided to join forces: The Parkinson’s Action Network (PAN) will be integrated into The Michael J. Fox Foundation (MJFF). Both have served the Parkinson’s community in separate and important ways, but as MJFF CEO Todd Sherer said in a joint press release, “Working as a single entity, MJFF and PAN will bring the passion and commitment of our joint community to bear on articulating and advancing key public policy priorities affecting millions of PD patients and families.”
Best known for its namesake founder and mission to fund Parkinson’s research, MJFF has awarded more than $450 million to fund Parkinson’s research. MJFF has distinguished itself as a fundraising giant and has kept their eye on their goal of funding high-quality PD research always with the goal of a cure in mind. In addition to funding research, the MJFF is known for its database of Parkinson’s related clinical trials, which it vets and makes available to anyone interested through a system that works a lot like a matchmaking service (i.e. the right trial for the right person based on personal preferences and interests). To learn more about the MJFF follow the link: https://www.michaeljfox.org.
PAN has been a Washington, DC-based organization created to be a single voice for a united Parkinson’s community, with a proven track record for effective advocacy for federal legislation and policy that considers the needs of the Parkinson’s community. We used to call this “lobbying”, now we call it “advocacy”. To learn more about PAN follow the link: http://parkinsonsaction.org.
Integration of PAN into MJFF creates a Parkinson’s patient advocacy trifecta that brings together the strengths of each organization: patient care (access, knowledge, education), research support (fundraising to support research, new therapies and ultimately a cure) and political action (legislation and public policy supporting the Parkinson’s community).
The merged organization will have two groups of advisors, the Unified Parkinson’s Advocacy Council, which will maintain a single voice for advocacy, and a Public Policy Council, which will provide guidance and advice on policy strategies that are important to the Parkinson’s community. While MJFF will continue to be based in NYC, for the first time they will also have an office in Washington, DC. You can read more about the merge here.
PAN and CIRM Have Common Roots
As it turns out there is a strong connection between PAN and CIRM. California attorney and Parkinson’s patient Joan Samuelson founded PAN in 1991. Samuelson described her “surge of excitement” in 1990 when she read about a possible breakthrough in Parkinson’s therapies that used tissue transplants, and how that hope was “swept away” when she read about a federal policy banning any federal support for such research.
PAN was Samuelson’s brainchild and reflected her prescient vision that it would take a political effort at the national level to counter this anti-tissue transplant movement. PAN became famous for its national network of grassroots organizers who could muster thousands of calls to Congress with a day’s notice to voice support or opposition to legislation.
It should come as no surprise that Samuelson was a supporter of California’s Proposition 71 that voters approved in 2004, creating CIRM. Samuelson became CIRM’s first Parkinson Patient Advocate and served in that role until 2014. She was a famously outspoken member of the ICOC (CIRM’s governing Board) and supporter of the Parkinson’s community.
I am humbled to be the one to follow her as the Parkinson’s Patient Advocate on the ICOC, but have no illusions that Samuelson didn’t just leave “big” shoes behind to fill, she left behind shoes so big a family of four could live in them! Samuelson lives in retirement in Sonoma County, CA. I met her once, but never knew her other than by reputation. Words I have heard used to describe her include character, integrity, brilliance, tenacity and one who conveys a sense of urgency for making the world a better place for Parkinson’s patients.
Today, there is not yet a cure, but there is plenty of hope.
Notes on Parkinson’s disease
Parkinson’s disease (PD) is a progressive disease that affects the nervous system and for which there is no cure. Over a million people in the US are known to have this debilitating disease. PD is a type of movement disorder, characterized by so-called motor symptoms including too little, too much, or inappropriate movements of the body. Motor symptoms are attributed to the death of specialized cells in a part of the brain that controls movement. These cells produce dopamine, a chemical that allows these specialized nerve cells to “talk” to each other and thus direct movement. What causes these cells to die is an active area of research, including CIRM-funded research. Our understanding of PD has gotten more sophisticated and we now understand that in addition to motor symptoms there are so-called non-motor symptoms. Non-motor symptoms include severe fatigue, insomnia, depression, anxiety, mild cognitive impairment and dementia among others. PD patients often report that non-motor symptoms impact the quality of their lives more than motor symptoms.