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Dear Mary and Group, Mary, you with gentle persuasive language have put forth a document that presents a whole picture that will allow the "newbies" and the general readership of the Listserv to form opinions and chose their course of action based on current facts. While it may be interesting to know the history and evolution of the PD orgs and their seeming lack of cooperation, I implore everyone to do their own research, ask questions and decide on what is happening today (not 5 years ago) and what we must do to get where we all want to be: PD free. There is no "them" and "us" - there is only the common goal. The Parkinson Alliance is the tool to achieve that goal: find a CURE. We have no history proving that we are successful, but we are ready to write history showing how we can be winners. It is short-sighted to evaluate before there is something to be measured. I have not read about other plans that have been proposed. The fundraising drive for PRO-Seed grants is the best(only) show in town - and, it does not detract from the importance of the services all other org. are doing. Margaret Tuchman Princeton, NJ B1941/Dx1980 [log in to unmask] -----Original Message----- From: Parkinson's Information Exchange [mailto:[log in to unmask]]On Behalf Of mary yost Sent: Thursday, April 29, 1999 5:52 AM To: [log in to unmask] Subject: for newer members: more about the organizations: LONG, way too long We often hold up the AIDS community for admiration for their effectiveness in organization and advocacy. Anyone who has seen the quilt, or even just all the red ribbons on TV on Oscar night can sense that they're doing their job well. A quick search on the Web brought up a page with 37 different AIDS organizations, from Broadway Cares to the Pediatric AIDS Foundation. When my best beloved brother-in-law died after 13 unlucky HIV positive years, the family was in too much turmoil to think of organizing contributions. We would have had a wealth of choices. So is it so terrible that there's not just one group? The AIDS organizations are helped in their hurry for better treatments and a cure by the visceral fear we all have of the epidemic that AIDS represents. Maybe that's why they work together so well. Or maybe we just aren't told of whatever disagreements they have behind the scenes. I believe that the Parkinson's organizations are all well-intentioned, as Charlie mentioned. A bleak rumor that circulates off and on is that they don't want a cure because that would put them out of business. That's simply silly. Speaking as just someone in the trenches, here are my uncensored opinions of the PD "orgs" in the U.S.: APDA prides itself on patient services and can be commended for the work Arlette Johnson and her successors contribute to helping young-onset patients especially. A bloody embezzlement scandal a few years ago tends to make some of us wary of giving them money. COPS for adult children of Parkinson's is a one-woman show, founded by the dynamite Jo Rosen, who hammers out the need for respite care for caregivers and provides support services as best she can, raising money practically all by herself. NPF is huge and is going through growing pains as it sheds its elitist image and re-examines its mission and its standards. There is much hope here because some of our Listmembers are on the board now and because the Parkinson Alliance is becoming an effective gadfly within their organization. On the West Coast we're fortunate to have Kim Seidman, who is covering more territory and centers than a one-armed paper hangar, and deserves more help from headquarters: it takes money to make money. Parkinson Action Network has an invaluable asset: Joan Samuelson, one of those jeremiahs of advocacy who gives her whole self to help us. Read any transcript of her testimony before Congress and be grateful that she's on our side: she is bright, articulate and totally dedicated. PAN serves a new role of keeping Congress aware that they've betrayed us by the appropriations shell game and that we won't be fooled. Parkinson Alliance is the carrot, where PAN is the stick. The members are the eager beavers who did the grass roots chores that won the Udall Bill. While PAN keeps after Congress to give money to NIH, the Alliance profers new, privately funded projects that entice NIH to want to spend money on PD research. The zealous Jim Cordy and his tireless "sisters", Margaret Tuchman and Carol Walton, are the driving forces. Parkinson's Disease Foundation is blessed with Robin Elliott, a leader who listens and who has represented us well in the National Academy of Sciences study of the dangers of NIH favoritism. PDF's merger with UPF was the first step towards the hope that many have that the national orgs. will someday unite. They won a treasure: UPF's newsletter is substantial and helpful. Parkinson's Institute has a treasury of human resources: Dr. Langston who made research on animal models possible, Dr. Tanner whose twin study is another landmark, Carole Cassidy, one of the most effective fundraisers in the U.S., and now Mickie Welsh, a stellar human being whose ability to really listen to PWP's is a model to all health professionals. the Independents/Mavericks: among them are Bob Martone and Bob Dolezal in Texas, Bev Steward, Joanne Nelson, Barb Mallut and Tony Schoonenberg in California, and Bob Bell in Seattle to name but a few. PWP's are served well by them and don't seem to care one way or another about the national orgs. and my favorite-- the Unity Walk: Ken Aidekman and Margot Zobel weaving all the above together in a day of celebration of our strengths, with the quixotic hope that we'll actually gather some day under one umbrella. Bless them. The jewel in the crown is the Parkinsn Listserve where we have a home and a forum and a connection to the wider world. Not to mention the inimitable Ivan! The "bottom line" is a message to newcomers: be encouraged that there are so many resources you can tap and be aware that your involvement will enrich your life and help these groups to serve us even better. Mary Yost, 51, diagnosed in 1990