Progress & Impact

PAN is the Unified Voice of the Parkinson’s Community

We are the unified voice of the Parkinson’s community advocating for better treatments and a cure.  In partnership with other Parkinson’s organizations and our powerful grassroots network, we educate the public and government leaders on better policies for research and an improved quality of life for people living with Parkinson’s.

PAN Advocates’ Hard Work Garners Significant Victories

National MS and Parkinson’s Disease Registries:

• The National MS and Parkinson’s Disease Registries Act, H.R.1362 and S. 1273, were introduced in the House and Senate in 2009
• PAN advocates worked to secure the support of 190 Representatives and 28 Senators
• The bill requires the Centers for Disease Control (CDC), to develop coordinated, separate national systems to collect and store existing Multiple Sclerosis (MS) and Parkinson’s disease data on incidence and prevalence
• If enacted, this legislation will give our community, for the first time, data on who has Parkinson’s and where they are located in this country

Support for Vietnam Veterans with Parkinson’s Disease:

• In October 2009, the Secretary of Veterans Affairs, announced that Parkinson’s disease will receive a presumption of service connection for disabled Vietnam veterans living with Parkinson’s disease
• PAN worked closely with U.S. Military Veterans with Parkinson’s Disease to ensure that our veterans who were exposed to Agent Orange receive the benefits they earned
• Based on a July 2009 report by the National Academy of Science’s Institute of Medicine (IOM), this decision simplifies and accelerates the benefits application process for Vietnam veterans with Parkinson’s disease who were exposed to Agent Orange during their service

Continuation of the Department of Defense’s (DoD) Parkinson’s Research Program:

• Each year the Parkinson’s community works with Congress to fund DoD’s Neurotoxin Exposure Treatment Parkinson’s Research (NETPR) program, the only Parkinson’s-specific federal research program
• In 2009, PAN advocates secured $25 million in funding for the NETPR program for Fiscal Year (FY) 2010

Securing Funding for Research and Drug Review:

• Sen. Arlen Specter (D-PA), Senate Co-Chair of the Bicameral Congressional Caucus on Parkinson’s Disease, introduced an amendment to Senate health reform legislation, which was signed into law by President Obama, that seeks to speed the development of new drugs and therapies
• The Cures Acceleration Network authorizes a new program at the National Institutes of Health (NIH) to cut the time between discovery and development of drugs and therapies through new grant-making mechanisms within the Office of the Director
• Thanks to the work of Sen. Specter and Parkinson’s advocates around the country, the economic stimulus bill passed by Congress included $10 billion in additional funding for NIH
• Congress approved $31 billion for NIH in FY 2010, a $692 million increase over last year’s funding level
• PAN advocates helped secure $2.347 billion in FY 2010 for the Food and Drug Administration (FDA), a $306 million increase over last fiscal year

Ending Restrictions on Federal Funding for Human Embryonic Stem Cell Research:

• President Obama issued an Executive Order on March 9, 2009, that lifted the prior Administration’s restrictive policy on embryonic stem cell research, and is a major step forward for the Parkinson’s disease community
• The Parkinson’s community played a key role in submitting comments to NIH before the final guidelines were released in July 2009.  The guidelines provide a pathway for existing stem cell lines, on which current research has only been able to proceed with non-federal funding, to gain the full support of the Federal government