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Dear Members of the Parkinson Information Exchange:
I just returned from meeting with a delightful woman from my area (Detroit)
who attended the PD Forum in Washington this week. We certainly were well
represented by Lorraine Jeffe, who is not yet on the www but will be as soon
as I return from vacation. She has the computer and everything she needs.
Will try to help as best I can as I have a Mac and she has an IBM type. I
only wish that each of you could have seen this woman, who was absolutely
brimming with enthusiasm! She had never before done anything like this
politically and had only found out about the forum two weeks prior to going.
She didn't know a soul when she left for DC. I was awe-stricken, let me
tell you. Sounds to me like the whole thing was very well received and like w
e have a lot of co-sponsors to thank and more to get on board!
I met Lorraine at church two Sundays ago and she really revved me into
action. I had been in a semi-paralyzed state since Jan. when my husband,
Art, was diagnosed. Will copy the letter that I'm sending to friends into
this message. It's not the greatest--far from it, but I've decided that it
doesn't have to be. I just borrowed a little here and a little there, all
from you, my listserv sibs, thank you very much. After talking with Lorraine
on that Sunday, I decided that I just had to start--start anywhere, so what
I've got here is just the beginning! I'd love to see some of the things
you've sent. Need more ideas to copy.
Sincerely,
Barb [log in to unmask]
Copy of letter below.
July 16, 1997
Dear (Friend's name),
As you know, my Art was diagnosed with Parkinson's Disease, a progressive
neurological disorder, in January. For many reasons (issues of employment,
privacy, etc.), he has not told many people. For a while, I, too, tried to
keep the secret, not wishing to impose on my friends and not wishing to
betray the love of my life, but eventually, I needed emotional support and
shared my pain. There is no way I can possibly thank YOU enough for your
warm and giving heart. You were really there for me!
Now we need your help in a new way. I am enclosing two stamped postcards (I
HAVE FAITH THAT THEY'LL BE HERE TO SEND) bearing the picture of Mohammed Ali,
who, like Janet Reno, the Pope, Billy Graham, Peter Jennings, an estimated
500,000 to 1,000,000 other people, and Art, has Parkinson's Disease.
(Statistics are hazy because the victims of this disease too often become
invisible, too crippled and too overwhelmed by their symptoms to function
publicly.) Fifty thousand new cases are diagnosed each year. My hope is
that you and anyone else of your choosing will ADDRESS the cards to your U.
S. Representative (list enclosed), JOT an extra word or two (EXAMPLES: "Than
ks for your help," "Please!" or "Would appreciate your support!"), SIGN
the cards, and DROP them in the mail. Be sure to INCLUDE your return address
so that your representative will know that you are in his or her district. Acc
ording to PAN, the Parkinson's Action Network, it is believed that there is
enough support in the U. S. Senate to pass what is informally called the
UDALL BILL (named for Mo Udall for whom any help will come too late), but not
yet enough in the U. S. House of Representatives. With your help in writing,
there may be. PLEASE KNOW, HOWEVER, THAT I DO NOT WISH TO IMPOSE ON ANYONE.
The intent of the Morris Udall Bill is to advance research breakthroughs as
fast as current scientific opportunity permits. Passage of the bill would
raise funding for Parkinson's research from its current funding level of
$26,000,000 to $100,000,000. While a 1996 report of the Dana Alliance for
Brain Research named Parkinson's "one of the brightest spots in brain
research" and leading scientists describe it as "the neurological disorder
most likely to produce a break-through therapy and/or cure within this
decade," research efforts remain grossly under-funded. This is particularly
frustrating when we are so near AND when it is expected that research into
its causes and prevention, the processes involved in the neuronal cell loss
which occurs, and effective treatment options, may well hold the key to other
neurodegenerative diseases, such as Alzheimers, ALS, and MS. The initial
task is to get co-sponsors so that the bill can even get to a vote.
(This part was filled with personal news!)
Have a new e-mail address: [log in to unmask] Netscape died. Do write or
call and let me know how your summer is going. AND THANKS AGAIN FOR YOUR
FRIENDSHIP AND SUPPORT.
Sincerely,
--PART.BOUNDARY.0.29093.emout15.mail.aol.com.869285499
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