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Barbara Mallut wrote: > > Good points, all, Ivan. > > I believe that within the great mass of people that make up the "Baby Boomer" > generation, there's going to be a younger, more vital group of individuals who > will be struck by Parkinson's then there was in the past. > > Heretofore, PD has always been referred to as an "old person's disease," and > indeed, it seems the general public AND the medical community tends to still > believes that only older folks have Parkinson's. > > THEY are in for a SURPRISE!! As more and more Boomers become a part of the > Parkinson's community we're going to hear a LOT of noise from them clamoring > for a cure. > > THIS is the generations that honed their skills as activists in the turbulent > 60s 70s (and Ivan was right there in the middle I betcha) <smile>. I think > we'll be seeing AND hearing from them as they become active, vocal advocates > for a Parkinson's cure. > > Parkinson's advocacy.... a cohesive Parkinson's grassroots VOICE... . really > only started within the past few years. And look at it NOW! It's snowballing > tremendously because of US... the Parkinson's COMMUNITY. > > Can't you just FEEL the potential... the POWER of such a group? <getting goose > bumps> All we really need to do is to get ANGRY enough to ACT and > then we're AWESOME (tipping virtual hat to our wonderful advocates who have > tackled Washington!) > > Barb Mallut > [log in to unmask] > ---------- > From: Parkinson's Information Exchange on behalf of Ivan M Suzman > Sent: Wednesday, July 08, 1998 9:15 PM > To: Multiple recipients of list PARKINSN > Subject: Re: WHAT! PD is a third-class disease > > I feel so frustrated and so exhausted, but, I try to look at the bright > side, even though I share Jerry's anger over our meager funding. > > The bright side is that we are:- > > 1. appearing on TV, radio and in newspapers in increasing numbers > > 2. the Udall Act is authorized for 3 years > > 3. we are closer than ever to getting $100 million/year in research and > public education funds through the udall appropriations process > > 4 we are greatly increasing our advocacy tools and skills > > 5 we are becomimg a community, and are no longer isolated from > one another ! > > Thank you Jerry for your positive energy and even for your anger. > > Ivan > ^^^^^^WARM GREETINGS FROM^^^^^^^^^^ > Ivan Suzman 48/11 [log in to unmask] > Portland, Maine land of lighthouses 57 deg. F > *********************************************************** > > On Wed, 8 Jul 1998 21:42:07 -0500 Jerry Finch <[log in to unmask]> > writes: > >"That means the agency spent about $1,162 in research monies > >for every heart disease death, versus $33,513 for every AIDS > >death." > > > >Hold on a cotton-pickin' minute here. My understanding is > >that PD gets 28 bucks a year, right? What's up with this? PD > >is a third-class disease? > > > To Barbara, Ivan and all, This is a point I keep on re-iterating - more and more of us are young, in the child-bearing, child-rearing, wage-earning segment of the population. And I tried to make this point at our Friday meetings with Staffers at Senators Robb and Warner - if I was cured, I would be out there, earning a salary, and paying taxes, not just a drain on the economy. Hilary Blue