Hi Kellly, and all P.I.E.N. list subscribers,
Warmest greetings from the state of Maine to all of you.
I know this message is somewhat unusual. I would like to testify in
person at the upcoming Appropriations hearing on Tuesday.
I'm putting this idea out on the P.I.E.N. to see what "sense of the
list"
develops. Is there is a widely-held feeling among P.I.E.N. subsscribers
that a dedicated grassroots advocate and PWP like myself would be an
acceptable
addition to Mr. Fox, Ms. Samuelson, and Mr. Cordy?
Two calls from Senator Olympia Snowe's Washington office have just come
in to my answerig machine at home, during which time I was out on my
daily
meditative walk. First, the suggestion was floated that the list of
three was
the completed planned list.
The second message was vastly different, and said that I can submit
written testimony.
Senator Snowe, whom I admire and respect immensely, can provide
any written statement from me, and it will be included in the record on
Tuesday.
I feel very, very honored at this willingness to be included in
the official record. I am especially proud of my two Maine Senators,
because Senators Snowe and Collins of Maine signed a VERY strongly-worded
letter last fall, which requested that Mr. Varmus do what is
needed to ensure full funding of the Udall law. Senator Boxer, and eight
male Senators on the Appropriations Committee, joined in signing the
copy I was sent - eleven brave Senators in all.
I really feel that the "sense of the list" may confirm my feeling that I
am a
very valuable possible addition to the planned testimony.
I am more than willing to raise money for a trip to Washington for
myself, and for
someone to help me get there, a trip I could not safely take on my own.
Many dedicated members of the list have seen my recent TV appearance on
videotape,
("The Challenge of Young Parkinson's Disease"), as have numerous family
members,
support group members, and health professionals.
I wonder if the PIEN community, being an unmatched open
forum for all of us PWP's, CG's and innumerable friends,
would feel comfortable if I could be added
to the Washington list. Or if not me, then someone else from
P.I.E.N. ! We are rich, and have powerful stories to tell.
I feel that the VISUAL impact of me testifying about my 14-year
battle with PD would be the best, the strongest possible lasting
impression I could make on the decision-makers in Washington.
If anyone would be kind enough to venture to comment, pro or con,
I will patiently wait and watch, to see what opinions emerge.
I trust the List completely. I have absolute faith that you will provide
the wisdom and guidance that my request engenders.
Please, Kelly, and friends, help me to know if I am overstepping any
boundaries
that have not been expressed. I truly hope you will find my willingness
to go to Washington and tell my story to be well worth adding to what is
planned for Tuesday.
Thanks for listening.
SIncerely yours,
Ivan Suzman 49/39/36 (age currently /age at diagnosis/ age at first
appearance of undoubted PD symptoms)
Portland, Maine :-)
On Thu, 23 Sep 1999 13:17:10 -0700 Kelly Abbett <[log in to unmask]>
writes:
>The hearing should be on C-SPAN but if you want to be
>sure, check the schedule hotline at 202-628-2205 on
>Monday.
>
>> > Hello everyone -
>> >
>> > Just writing to confirm the exciting news and
>> give
>> > some more information. The Senate Appropriations
>> > Labor-HHS Subcommittee is holding a hearing on PD
>> > research funding - and Michael J. Fox is going to
>> > testify! Joan Samuelson, President of PAN, will
>> also
>> > testify.
>> >
>> > Tuesday, September 28, 1999
>> > Hart Senate Office Building, Room 216
>> > 9:30 a.m.
>> >
>> > *Introduction/Opening Remarks
>> > -Chairman Specter
>> > -Ranking Member Harkin
>> >
>> > *Witnesses
>> > -Dr. Gerald Fishbach, Director, National
>> > Institute
>> > for Neurological Disorders and Stroke
>> > -J. William Langston, MD, President, The
>> > Parkinson's Institute
>> > -Michael J. Fox, Actor
>> > -Joan Samuelson, President, Parkinson's
>> Action
>> > Network
>> > -Jim Cordy, Advocate, Greater Pittsburgh
>> Chapter
>> > of National Parkinson's Foundation
>> >
>> >
>> >
>>
>
>__________________________________________________
>Do You Yahoo!?
>Bid and sell for free at http://auctions.yahoo.com
^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses deg. F :-)
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