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Ivan - Mohammed Ali will do PD commercials beginning soon as seen in an interview on Extra - he and his wife were practising. Flo At 04:11 PM 11/23/97 -0500, you wrote: >^^^^^^GREETINGS FROM^^^^^^^^^^ >Ivan Suzman 47/10 [log in to unmask] >Portland, Maine land of lighthouses 26 deg. F Snow, snow, snow, and >more snow >*********************************************************** >Dear Kathy, Charlie, and Listsubscribers, > > It seems to me that PWP's and their caregivers should have more to say >about the PRIORITIES for our future than any corporation like the NPF. > > If we allow the NPF to lead us, we'll be divided into the pro-NPF's >and the anti-NPF's. > > Don't forget how the NPF has refused to give me $2200 to pay me back >for the doctor's appointment that it set up for me and then abandoned. >Heartless corporations can't help us. > > I also think it is RESEARCH PRIORITIES we should be all commenting on. > > For example, I think it is a better expenditure of the Udall Act >moneys to focus on the genetic and biochemical causes of Parkinson's. >Surgical research to me is secondary, because that seems like refining a >band aid on PD, instead of understanding the root cause of PD. > > HAS ANYONE SEEN the TV commercial to stop Epilepsy? It shows a >series of women, each one's eyes burning fiercely with the hope that >their epilepsy can be cured. > > It is VERY powerful. > > How about PUBLICITY about Parkinson's? A few well-made TV >commercials, with close-ups of PWP's saying something like "Let's Find >Out What Causes PD," like the Epilepsy commercial, could reach the public >quickly and powerfully. > > Imagine the impact on the public if TV commercials with we PWP's on >them played when EVERYBODY watches TV: at the 6:00 News Hour. > > And finally there ought to be FINANCIAL ASSISTANCE. As a person >with an annual income of $7900, due to being forced to survive on social >security, and classified as "disabled," any medicine, procedure or >therapeutic program is OUT OF REACH unless Medicaid has approved it. > > SO I can think about and dream about the CURE, but it takes LOTS of >us PWP's and Care-partners to be VOCAL to make a difference. > >Ivan Suzman > > > > > > > > > > >On Sun, 23 Nov 1997 10:07:44 -0500 Kathy Kunz <[log in to unmask]> writes: >>Charlie-- >> >>I'm not up on all the nuances of rivalries, affiliations, and turf >>wars, >>except what I read on the list, but that announcement also struck me >>as >>spoiling for trouble. A true Patient's Congress should be as >>unconnected >>as possible to any current "player." A steering committee meeting in >>Miami? Sure, it will be independent, right! (not that a sunny clime >>doesn't sound inviting in January; whenever I had to interview a >>doctor for >>an article over the holidays, he was always in Aruba for a >>convention.) >> >>Any Congress steering committee should meet on neutral ground, funded >>by >>contributions from as wide a group as possible: PD >>foundations/organizations, drug companies, grass roots PWP (I'd gladly >>pop >>for a truly independent meeting) so that no one entity predominates or >>feels they can run the show. I wish you were one of the twelve, with >>your >>common sense, the-emperor-has-no-clothes approach. >> >>Kathy Kunz >> >