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Gail Vass has very well described the PAN Forum - 4 days packed with research updates, legislative briefings, advocacy training, and the great emotional uplift of being among 200+ Parkies and their loved ones from all over the United States and Canada (represented by Murray and Brenda Charters) - all united in the belief that our actions can make a difference - and that by working together we will defeat this awful disease. We had the honor of being addressed by Rep. Lane Evans of Illinois, who is fighting for the right to run for re-election based on his abilities and his record, while his opponent is attacking him for having Parkinson's. We heard inspirational send-off speeches by Rep. Mark Udall and his sister Anne Udall (son and daughter of Mo Udall), as we prepared to take on the Hill. We felt the presence of the late Senator Paul Wellstone, who was a great champion of the Parkinson's community in Congress, cheering us on and imploring us to take action for what we believe in. Below is a summary of the key legislative issues discussed during the Forum. Those who could not attend are encouraged to contact their Senators and Representatives and also advocate for these issues. There is more information on the PAN web site : www.parkinsonsaction.org or you can call their office for detailed information, sample letters and talking points -- 800-850-4726 The following are excerpts from PAN's 2004 Action Agenda: 1. Neurotoxin Exposure Treatment and Research Program (NETRP) Appropriations "-- a research program of the Department of Defense - investigates the effects of certain toxins on the nervous system. Knowledge of exposures, incidence of disease afterwards and research on how the conditions can be treated or prevented is important for protecting our military personnel. Much of the research also has applications to civilians, and a good number of the NETRP grants fund Parkinson's research. NETRP funds research in 22 states. Funding for FY 2004 is $26 million. $57 million is sought for FY2005." 2. NIH Appropriations "The President has proposed only a 2.7% increase for the NIH in FY 2005. This would not even keep up with biomedical inflation and would not fund all ongoing biomedical research, let alone new projects. Congressional support for a 10% increase is sought. Additionally ask your Reps and Senators to suppport strong Congressional language supporting ongoing and new Parkinson's disease research efforts. The Parkinson's Research Agenda developed by the NIH in 2000 called for an increase of $1 billion to fully fund PD research over 5 years. It has never been fully funded ." 3. Department of Veteran's Affairs Parkinson's Disease Reseach, Education and Clinical Centers - "These 6 centers were started in 2001 and operate as a national consortium. They conduct research in biomedicine, provide rehab and health services and run clinical trials for at least 40,000 PD patients who are veterans, each year. The President has proposed cutting the VA medical and support funding by $50 million in FY 2005. Request support for increased funding for these centers." 4. Somatic Cell Nuclear Transfer (SCNT) NOTE: I realize there are some list members who are not in favor of this research. If you are one of them, just skip this section, but PLEASE support the rest of the PAN Agenda . The funding issues are equally as important, and need the support of all of us. "PAN supports research involving both adult and embryonic stem cells. Both have shown promise, but many scientists believe and studies have shown that embryonic stem cells will likely be more effective in curing (certain) diseases....SCNT has the potential to treat and provide better understanding of deadly and disabling diseases that affect more than 100 million Americans such as cancer, heart disease, diabetes, Parkinson's, Alzheimer's, MS, spinal cord injury and many others. ... Placing restrictions on this type of research has a chilling effect on biomedical research in the U.S. ...We have already seen reseearchers move to countries such as the UK, Singapore, Israel, Sweden and Australia, which have more supportive policies..." Ask your Senator to support the Hatch-Feinstein-Specter-Kennedy-Miller bill - S.303 - that would ban reproductive cloning, but protect research freedom and permit regenerative medicine. Additionally, a letter to the President is being circulated in the House (the Castle-DeGette-Cunningham-Dooley Dear Colleague letter seeking expansion of the current federal policy on embryonic stem cell research. " Ask your Representative to sign on. 5. Finally "ask your Representative to join the Working Group/Caucus on Parkinson's Disease. The Working Group began in the House, and now has over 60 members. It's mission is to increase PD awareness among members of Congress and improve the state of PD research. The Caucus is now also open to Senators . Ask your Representatives to contact Mandy Wimmer in Lane Evans' office (202-225-5905) or Jane Williams in Rep. Fred Upton's office (202-225-3761). Senators whould contact Oliver Kim in Sen. Debbie Stabenow's office (202-224-4822.)" Linda ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn