PD ADVOCACY

Take action on issues important to the Parkinson’s community. Make a difference! All information below is from the Parkinson’s Action Network (PAN). For more information go to Parkinson's Action Network

PD Registry

On behalf of the entire Parkinson’s community, the Parkinson’s Action Network (PAN) strongly supports the National MS and Parkinson’s Disease Registries Act, H.R. 1362/S. 1273. This legislation will establish National Multiple Sclerosis (MS) and Parkinson’s Disease registries to determine the incidence and prevalence of the diseases by laying a foundation for better evaluating and understanding these diseases. PAN worked closely with the National MS Society to facilitate introduction of legislation in both Chambers of Congress to address the lack of accurate incidence information.  Both organizations will be advocating this legislation in the hopes to have it signed into law in 2010.

For more information go to PD Registry and Click on “Take Action” to e-mail your Representative and Senators by using PAN’s CapWiz system and asking them to co-sponsor this bill.

Both NYS Senators and Representative Chris Lee are already co-sponsors. Use the CapWiz system to thank them – it will send a thank you instead of a request if they have already co-sponsored the bill.

PD RESEARCH FUNDING (NETPR)

Ask your Representative and Senators to Support Parkinson's Research at the Department of Defense. The Department of Defense Program is the Only Parkinson's-Specific Research Program Funded by the Federal Government

We are once again faced with the challenge of securing funds for the Department of Defense Neurotoxin Exposure Treatment Parkinson's Research (NETPR) program. The Parkinson's community needs your help to secure funding in the Fiscal Year 2011 Defense Appropriations bill for the NETPR program - the only Parkinson's-specific grant program in the Federal government.

The NETPR program is a national, peer-reviewed grant program that studies how to protect members of our military from toxic substances, head injuries, and other known contributors to Parkinson's disease. In addition to helping protect our soldiers, research breakthroughs in prevention, detection, and treatment are immediately applied to the entire Parkinson's disease community.

Each year, Parkinson's advocates and members of the Bicameral Congressional Caucus on Parkinson's Disease lead the effort to fund the NETPR program in the Defense Appropriations bill. Funding for the NETPR program is not automatic: each year we secure support for the program by asking Members of Congress to sign a "Dear Colleague" letter that requests funding for the NETPR program.

Thanks to the outstanding advocacy efforts of the Parkinson's community, we secured $25 million for the NETPR program in Fiscal Year 2010 - a year of tight budgets and many program cuts.  Help our community request $55 million for the Fiscal Year 2011 NETPR program by e-mailing your Representative and Senators NOW and asking them to sign the NETPR program Dear Colleague funding letter.

To learn more about NETPR go to: NETPR and Click on “ Take Action “ to ask your Senators and Representative and sign the “Dear Colleague” letter for NETPR funding. (Also through CapWiz.)

For any questions on these issues, e-mail Linda Herman, Ljherman1@juno.com

You can now view a webcast of PAN’s 2010 Forum from your home computer. For details go to: PAN Forum

Last updated 3/12/10

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Legislative Contacts