December 2009 E-Newsletter - From the CEO
| In this issue...
- From the CEO
- Policy Focus
- PAN in Connecticut
- Tax Benefits to Holiday Giving
- 2010 Forum Registration
2009 Ends, and PAN Looks to a Successful 2010
As another holiday season is upon us, it is natural for people and organizations to look back at the year that is about to pass. 2009 was a difficult year for our country’s economy, and PAN was not immune to the side effects of the recession. While our revenue may have dipped this year, our passion for the issues affecting the Parkinson’s disease community has not faltered. We managed to weather the economic storms, and while 2010 will not be financially easy, we are content in knowing that PAN is continuing to work for better treatments and a cure for Parkinson’s disease.
In 2009, PAN advocates were extremely active in pushing for better treatments and a cure for Parkinson’s disease. In the past year alone we have:
- Seen the introduction of The National MS and Parkinson’s Disease Registries Act (H.R. 1362/S. 1273) in both the House and Senate. PAN advocates, working with our allies in the Multiple Sclerosis community and on Capitol Hill, have led the push for this bill to learn how many people live with Parkinson’s disease and where in our country they live. Currently, 155 House members and 21 Senators are signed on as co-sponsors of this legislation.
- Worked with U.S. Military Veterans with Parkinson’s Disease to support veterans exposed to Agent Orange living 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. Now, Vietnam veterans applying for disability benefits with Parkinson’s disease do not have to prove an association between their illness and military service. We are awaiting regulations and will work to ensure they are comprehensive for Vietnam veterans living with Parkinson’s disease.
- Helped end restrictions on human embryonic stem cell research. After continued support from the Parkinson’s community, President Obama signed an Executive Order in March reversing the restrictive policies of the previous Administration. Parkinson’s disease advocates provided numerous and incisive comments to the National Institutes of Health (NIH), and in July, NIH provided final guidelines that will allow this research to flourish. Finally, in December, NIH approved the first stem cell lines under the new guidelines, providing new avenues for Federal support of this exciting research.
- Successfully advocated for the inclusion of funds for the Neurotoxin Exposure Treatment Parkinson’s Research (NETPR) program at the Department of Defense. NETPR is the only Parkinson’s-disease specific program funded by the government, and PAN advocates must secure funds for this program every year. Even in this difficult economic climate where many defense programs have been cut, PAN advocates helped secure $25 million in the final Defense Appropriations bill. This bill has yet to be passed by the Senate, but the House passed the bill earlier in the week. We expect the Senate to pass this spending bill, including the $25 million for the NETPR program, in the coming days.
- Continued our work to hasten the discovery of new drugs and therapies. During the health reform debate, Senator Arlen Specter (D-PA), Senate Co-Chair of the Bicameral Congressional Caucus on Parkinson’s Disease, introduced an amendment that will help speed the time between discovery and approval of the drugs and therapies of tomorrow. The development pipeline can take decades, and it is vital that this be shortened. PAN has focused on this troubling trend for quite some time, and it is heartening to see that money for medical research and innovation is finally included in the health debate.
PAN looks forward to working with our allies and advocates in the coming year on these and many other issues affecting the Parkinson’s disease community. It is terribly important that we continue pushing for better treatments and a cure for Parkinson’s. This work, and the work of PAN advocates everywhere, is not possible without the support and generosity of our donors. During this holiday season, I ask that you consider PAN for your end of year giving. You may make a secure online donation by clicking here:
or you can mail your gift to PAN at:
Parkinson’s Action Network
1025 Vermont Avenue, N.W., Suite 1120
Washington, DC 20005
Thank you for your generous support this year. The work of our grassroots advocates makes PAN possible, and I look forward to working with you all next year on the issues facing our community. Happy Holidays and Happy New Year!
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