^^^^^^WARM GREETINGS FROM^^^^^^^^^^
Ivan Suzman 48/10 [log in to unmask]
Portland, Maine land of lighthouses 40 deg. F
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Dear Mr. President,
I am writing this open, personal letter, with one copy, to the
Parakinson's International e-mail Exchange List, to thank you very much
indeed for being the first American President to mention Parkinson's
Disease in your State of the Union Address. This first-ever reference to
we who suffer from what is still a terminal, unpredictable and mysterious
illness, has given some of us more hope that there may be an infusion of
money that is desparately needed to try to cure, or at least alleviate,
the miserable burden of Parkinson's.
Unfortunately, however, your address was flawed, and gave the world
false hope, in that you were poorly informed when you said,
"Last year, scientists located the gene that cause Parkinson's
Disease -- in only nine days."
This statement is almost entirely wrong, and has caused confusion and
difficulties worldwide.
As far as I am aware, there is an ongoing study of just one, single
Italian and Italian-American family, in which a gene specific to that
one family has been identified, and that appears to be involved in the
expression of Parkinson's Disease.
But for perhaps 2,000,000 Americans who suffer terrribly from the
ravages of Parkinson's, no gene or set of genes that either causes
dopamine-deficiency disorders like Parkinson's, or is at least carried
from one generation to the next, and which in combination with other
genes, may cause Parkinson's, has ever been identified.
This is not to minimalize the importance of genetic research on
ourselves and our families. I am very fortunate to still have just barely
enough energy to participate in the International Parkinson's e-mail
Exchange List, which includes more than 1600 corresponding participants.
There is, among us, some new hope now, both because at least you
mentioned "the P-word" (Parkinson's), and because the Morris Udall
Parkinson's Act has been authorized by Congress, and ANXIOUSLY awaits
your attention and backing, so that the $100,000,000.00 allowed therein
will be appropriated for research, public education and to aid devastated
families and individuals.
Only when this Udall money is ACTUALLY appropriated, and put into
action at the NIH, so that grant applications to find the genetic and
neurochemical causes of Parkinson's SPECIFICALLY, are funded for the very
first time, can we who live with Parkinson's collectvely breathe a
somewhat anxious sigh of relief.
Mr. President, would you please ask your health advisers to talk
with you about correcting the mistaken ideas about genes for Parkinson's
that your Address has caused? Many of us Listmembers, whether only
grateful, or even truly thrilled and thankful to you, for mentioning
Parkinson's Disease, are encountering the idea that the Parkinson's gene
has been located, and that therefore a cure is already on the way. We now
have to overcome a new and unimagined hurdle in our tottering paths.!!
I myself am in my tenth year of Young Onset Parkinson's, which cut
me off from a teaching and research career in my early 40's. At age 48,
I seem to have as options only dangerous, very experimental brain
surgery, or polydrug therapy that at best still leaves me completely
non-functional from 7 to 9 hours a day, and also forces me to take
combinations of medicines 9 times daily, around the clock.
I am already in need of 77 hours of Medicaid-generated, but
low-paid ($6.25/hour) personal attendant care. For so many of us, World
Parkinson's Day is coming right up, on April 11. And long before that
Day, Joan Samuelson and James Cordy will be testifiying in Washington to
seek your support for immediate appropriation of the precious, new Udall
funds.
Please, Mr. President, do what you can to properly inform the
public, and join us in fighting the ravages of Parkinson's Disease. Our
time is limited. Every day is a State of Emergency for us, and for oujr
loved ones.
Yous very sincerely,
Ivan Suzman
48-years/10th year of PD
9 Range Street
Portland, Maine 04103
