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FYI Subject: Important Parkinson's News To: "Charlotte Mancuso" <[log in to unmask]> From: "Amy Comstock and Robin Elliott" <[log in to unmask]> Date: Thu, 8 Sep 2005 17:50:13 -0400 (EDT) Important Parkinson's News TV Show on GDNF and Amgen: CBS-60 Minutes, September 11 Take Action! A Message From the Parkinson's Disease Foundation and the Parkinson's Action Network September 8, 2005 Dear Friends and Community Members: On Sunday, September 11, the CBS television newsmagazine 60 Minutes is scheduled to air a program on the controversy surrounding recent clinical trials of GDNF, a growth factor that is widely believed to have potential for the treatment of Parkinson’s disease. This is a media event of great importance to the Parkinson’s community and we strongly encourage you to watch it. Check your local listing for air times. Although none of us have seen the segment, we do expect it to feature representatives of the key players in the issue, including the patients who participated in the trial and the doctors who treated them. It will also surely direct a public spotlight on the complex process of drug development, including the rights and roles of manufacturers, regulators and of course the trial participants (and their families) on whom the entire process of clinical trials depends. At the Parkinson’s Disease Foundation and the Parkinson’s Action Network, we have taken the position that the GDNF trial participants who, with physician concurrence, wish to have their access to GDNF reinstated, should be permitted to do so. Amgen’s decision to refuse patients and their doctors was a mistake because it denies them the opportunity to continue with a potentially useful treatment, and it denies us all the opportunity to gather more scientific data about the long-term effects of GDNF. Similarly, PDF and PAN have consistently called on Amgen to provide more information to the PD community about the future of GDNF research. We believe that this was not done in the Amgen-GDNF case and have accordingly been critical of the company and the role it has played. You should also be aware that a group of Parkinson’s community leaders are using the 60 Minutes story to build support for a national drive to raise awareness of the issue and generate support both for the GDNF trial participants and for a commitment to serious future research on the potential of GDNF and other growth factors to help people with Parkinson’s. They have organized a network of leaders in dozens of communities and have prepared useful materials for use by local activists, speakers and people who want to write letters to the editors of their local newspapers. If you would like more information on this community effort, contact AJ Wasson at [log in to unmask] We encourage you to watch this important television program. If you have any reaction you would like to share afterwards, please contact either of us at [log in to unmask] or [log in to unmask] Best regards. Sincerely yours, Amy L. Comstock Robin Elliott Executive Director Executive Director Parkinson's Action Network Parkinson's Disease Foundation P.S. Bear in mind that television schedules can change, especially when breaking news is involved. Be sure to check your local TV listing a day or two ahead of time to make sure that the segment is indeed airing on September 11. If you no longer wish to receive e-mail from us, please click here. ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn