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Old 01-11-2009, 11:18 PM
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pegleg pegleg is offline
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Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
pegleg pegleg is offline
Senior Member
pegleg's Avatar
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
Default Time to make noise about a few things!

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. I also noticed that paula's signature carries a link to the Faster Cures website and their Top 10 "wants" for this year. 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 to 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
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"Thanks for this!" says:
girija (01-12-2009), jeanb (01-12-2009)