dear susan
I think you are perfectly correct
that the hearing needs to be packed
as it was for other groups
such as MS and breast cancer.
But I think you will also find
that among those testifying at those hearings
were not only the rich and famous,
but some of the little people as well.
It is the stories of people like Ivan Suzmann
and his constant battle to find care givers,
of gina cass and her struggles to go
on a simple holiday by air,
Brig and Gerrie Haines,
jeanette Fuhr,
joan Snyder
Ted an* Cårole melser,
Joe who isn't here to tell his story,
Ms Hewitt who had to stop taking medication
because a glitch in the system
meant she couldnt afford it any more.
And Jennifer Smith and many many more.
Marriages break up,
houses are foreclosed .
because they cant pay the taxes....
and people die because hospital staff
dont understand the special needs of pwps.
What about that indom
itable young old man,
don mckinley?
ANd what about some of the care givers,
like yourself,
and Camilla Flinterman
and Nita Anders who writes letters
I heard today of someone who is declaring bankruptcy
because he cant afford to pay his medical bills.
I'm here on the spot.
I would be prepared to tell my own story -
my battles with foster care, .
and if anyone on the list wants to send me a letter
to read , telling their stories,
i'm prepared to do that too.
Because i think that these are the stories
that paint the complete picture of PD.
I'm probably not the best person to do this
There are others more qualified, better public speakers than I.
But i'm here and i'm ready and willing.
So how about it, Susan , Peter Morobito, Leon?
Is it time for the voice of the little people
to be heard?
Hilary Blue
If I am not for myself, who is for me?
And if I am just for myself, what am I?
And if not now, when?
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Susan Hamburger wrote:
>
> Hi Everybody,
> I wanted to write a follow-up note to all of you about the Senate Hearing on Tuesday. Michael J. Fox, Joan Samuelson (PAN), Jim Cordy (an advocate from Pittsburgh) and Dr Wm Langston (author of 'The Frozen Addicts') will be testifying. I have been informed by PAN (Parkinson's Action Network) that the room is huge(seats 400) and they NEED a very large turnout to make our community look as interested as some of the other disease groups that have come before this committee asking for money. Groups such as MS, breast cancer, etc have overflowed the room and they feel we will look weak in comparison if we don't show up. It apparently can make a difference if the Committee sees lots of faces. SO, PLEASE come on Tuesday morning. Bring your family members and anybody else that could take up a seat. Remember that it could make a difference in the amount of money that is allocated for PD research in the next Budget - and that makes a difference to me, and to you I'm sure.
> If any of you know any others with Parkinson's Disease, part of our group or not, please tell them about it and urge them to come. We are the only ones that can really muster up the support that is needed in the national PD community because we live in the area - so - let's do it for those who don't live here and can't attend.
> I really hope to see many of you there. It is in the Senate Hart Building (on 2nd Street, just North of Constitution Ave), Room 216, starting at 9:30, but it is recommended that you get there early. Parking is available at Union Station or the Red Line Metro stop at Union Station is another possibility.
> Take care of yourselves!
>
> Sue Hamburger
> 301-654-5572
> Life is too short to drink cheap wine!!
-------rv4rfvvvvvvvv-
