PAN's History

In 1991, Joan Samuelson founded the Parkinson’s Action Network (PAN) when she realized that Parkinson’s disease was not receiving enough funding or attention from the Federal government.  Joan immediately put her hard work and creativity into building a Parkinson’s organization to educate those with Parkinson’s how to advocate for themselves.

Diagnosed with Parkinson's in 1987, Joan left the practice of law to found PAN four years after her diagnosis.  Upon starting the organization, she used her spirit and drive to fight for more attention for Parkinson’s disease.  This determination and dedication inspired many more around the country to become advocates and successfully fight for their cause.

Joan immediately took her fight to Capitol Hill where she walked the halls of Congress, knocking on doors to be heard.  With each meeting, her voice grew a little louder and PAN began to grow.  What started as an organization of one person has now become a strong, nationwide advocacy group and the unified voice of the Parkinson’s disease community.  Joan’s dedication has helped take Parkinson’s disease from limited visibility to the national consciousness.  Thanks to Joan’s work, serving as PAN President until 2006 and Board Member until 2008, millions of Americans today understand more about Parkinson’s disease and are involved in the fight for a cure.

Timeline:

1991 – PAN is founded by Joan Samuelson.

1994 – PAN holds it first Research & Public Policy Forum, educating advocates and advocating for a cure on Capitol Hill.

1997 – PAN advocates successfully worked to enact legislation that created the Morris K. Udall Centers of Excellence for Parkinson's Disease Research. On November 13, 1997, President Clinton signed the Morris K. Udall Parkinson’s Disease Research Act of 1997 into law.

1997 – Neurotoxin Exposure Treatment Parkinson’s Research (NETPR) program is founded at the Department of Defense.  This remains the only Parkinson’s-specific research program in the entire Federal government.

1999 – The Bicameral Congressional Caucus on Parkinson’s Disease is founded.  Our 175 Champions in Congress lead the legislative charge for increased funding and better policies for the Parkinson’s community.

2001 – The Parkinson’s Disease Research, Education, and Clinical Centers (PADRECCs) are founded through the work of PAN advocates and Rep. Lane Evans.  The PADRECCs provide state-of-the-art care to our veterans living with Parkinson’s disease throughout the country.

2006 – PAN advocates work to keep the PADRECCs open to care for our veterans with Parkinson’s disease after the Veterans Administration threatened to close the sites.

2007 – Parkinson’s advocates lead the charge to reverse President Bush’s restrictive stem cell policy.  This work culminates in Congressional passage of S. 5, which would have overturned the policy.  Unfortunately, President Bush vetoed the legislation.

2008 – Three new Parkinson’s center grants are awarded by the National Institute of Environmental Health Sciences.  These centers bring together clinical and basic researchers together to identify the causes of the disease.

2009 – The National MS and Parkinson’s Disease Registries Act is introduced in Congress.  The registry will, for the first time, give us information on who has Parkinson’s disease and where they are located in this country.

2009 – President Barack Obama signs an Executive Order reversing the restrictive policies of the previous administration, paving the way for federal funds to conduct more ethical embryonic stem cell research.