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Don't we need to know what causes this(these) disease(s)? My fear is a "cure" will not fit all. or is it not necessary to know etiology of disease? Ray Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] -------------------------------------------------- From: "Peggy Willocks" <[log in to unmask]> Sent: Sunday, January 11, 2009 9:24 PM To: <[log in to unmask]> Subject: Time to make some noise! > I'm posting this in several forums and here for feedback. > > I love David Letterman's Top 10 list, which can be hilarious. But I want > to > talk to you about a few serious topics relevant to Parkinson's disease. > Visit Faster Cures website and their Top 10 "wants" for this year > www.fastercures.org . Faster Cures was established by the Milkin > Foundation > after Mike Milkin survived a bout with cancer. Now the philanthropic > Milkins > are putting a bundle into helping all diseases find faster cures. And they > aren't alone. The Grove Foundation (Andy Grove - former CEO of Intel who > also has PD) is uncovering every shell they can too solve curing or at > least > better treatment of PD than a 40-year-old drug. And look at the Fox > Foundation; Mike's org has raised upwards of $132 million in helping find > a > cure. > > Everybody wanted "change," and believe you me - it's coming! I feel for > the > Obama administration.. One can only imagine a different political party > going into office after 8 years; there will be so many hands out asking > for > help that some will have to go home totally empty. and it's going to be up > to us (grassroots) to get their attention. So this thread is to brainstorm > what our Top 10 list should be. > > TOP 10 LIST FOR THE PARKINSON'S COMMUNITY > > 1. FIND OUT HOW MANY PEOPLE HAVE PD! > I have volunteered with PAN for 8 years (Parkinson's Action Network), and > each year at teir forum we go through 2-3 days of "training" and research > updates, then visit our legislators on Capitol Hill too tell our story. > Every time somebody asks me, "How many people have Parkinson's in > Tennessee?" And every time I have to answer, "er . . . um . . . I don't > know." Enough said! > > 2. WE NEED A TEST FOR DIAGNOSING PARKINSON'S ! > Not only are we confused as to how many have PD, but we aren't really sure > if those diagnosed really have PD! - we're trying to cure a disease > diagnosed purely by symptoms. And on top of that - our clinical trials are > based on "observed symptoms." Who's to say that a number of people out > there > taking Sinemet for years were just shaking from anxiety on initial > diagnosis > and the rest of their symptoms are as a result of the meds. There's > something wrong with this picture. > > 3. WE NEED __________________? > aha! I'm turning it over to you for a few thoughts. > > Please join in this discussion > > Peg > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn