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