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Ivan M Suzman wrote: > > ^^^^^^GREETINGS FROM^^^^^^^^^^ > Ivan Suzman 47/10 [log in to unmask] > Portland, Maine land of lighthouses 48 deg. F > *********************************************************** HI IVAN: I agree that something needs to be done. Hasn't the drug (Pramipexole) received preliminary approval. I would like to know what the hold up is. Is it bureaucratic or scientific? Or does it have to do with marketing issues (eg the detail men are not trained yet and Upjohn is holding back something until they can make a big splash at a Neuro convention. I have been involved with drug companies long enough not to put it past them. Or like has happened before has a major safety issue emerged just prior to release which the FDA is legitimately holding it back. Its hard to know. Its not my style to go on the attack without facts. If we can't get the facts we may need to go along with your idea but if we atack witout facts our credibility for anything we do will be suspect. It might be useful for people who have gotten data through the FDA, Upjohn or reliable sources to post (again) what they have heard + where you heard it. If you have posted the info before please e-mail it directly to me. I will summarize the data for the list. Charlie Charles Meyer, MD, wrote: > > >People have been blaming the FDA or Upjohn. I > >think it is both their faults and the inability apparently is leaving > >many of us waiting. > > Hello PWP's, CG's and friends..... > > I agree with Dr. Charles Meyer. My question is, how to we DRAMATIZE > the need for new drugs to be developed AND RELEASED?? > > This is why I wrote about my anger, and that this is the time to be > LOUD. > I feel that it's only when we are getting on TV that we will be > effective. > > As a civil and human rights activist who was elected a National > Democratic Delegate for Jesse Jackson in Atlanta in 1988, I can tell you > that however hard it is, we PWP's MUST form a Coalition that does > NON-LOBBYING, VISIBLE actions, like any other group with a cause. > > Younger and more mobile PWP's must aid more infirm PWP's to join in > being SEEN. We must get on TV as often as possible. BUT, as Sonya from > Denmark said to all of us, HOW? > > The regional Udall Bill steering committee network in New England is a > small example of regional PWP effort, but its purpose is legislative. > Nowhere have we PWP's organized MASSIVE rallies, speak-outs and > assemblies. > > I hope that during the next several months, some of these LARGE > public events can develop.THERE is the potential for HUGE numbers of > PWP's to organize a public assemblies to cure Parkinson's. > > What about another DAY in the month of August or September, in > addition to April 11? What about a coordinated world day of Action? One > day a year is hardly enough. > > In the United States, pressure on the FDA and the Pharmaceutical > Companies must come from PWP's in large numbers APPEARING in PUBLIC. > > We must be brave, overcome shame and fear, and BE SEEN. > > -Ivan -- ********************************************************** CHARLES T. MEYER, M.D. MADISON, WISCONSIN [log in to unmask] **********************************************************