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This is a copy of a press release about the ball of string sent by
Barbara Blake-Krebs to 22 Kansas newspapers. I know if more people
contribute in this form and other ways this project will bring the
awareness that has been denied to our cause. If you have any questions
please post them on the Network. Please help keep sending those
envelopes with tieable material to:
Parkinson's Support Group of Upstate NY or (PSGUNY)
P.O. Box 23204
Rochester New York 14692-3204
On the envelope please put Attention: Ball
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Wed, 23 Apr 1997 17:05:46 -0400 (EDT)
Date: Wed, 23 Apr 1997 17:05:46 -0400 (EDT)
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To: [log in to unmask]
Subject: Ball - KS Press Release
Hi Donna, I have just e-mailed this, Hope we get some bites! I gave both
our E-Mail addresses for further info. I trust that that was alright.
Press Release: Parkinson's Disease Awareness Month Project
In Cawker City, Kansas, there is a ball of twine reputed to be the largest
such ball in the world. Well, if you or a family member have Parkinson's
Disease (PD), you might want to get out a few feet of twine, ribbon, old
neckties, or other tieable material for another ball--a public awareness
project in Rochester, NY.
"The objective," says the project's head, Donna Testa, whose 48-year-old
husband has PD, "is to build the biggest ball we can imagine. It's a way to
make this dibilitating disease more visible." Barbara Blake-Krebs of
Merriam, Kansas, who was diagnosed with PD at the age of 43, adds, "because
many PDers literally lose their voice due to weakened vocal muscles, it's
their way of SHOUTING like in the film Network, 'I'm fed up and I'm not going
to take it any more.'" The idea came up from brainstorming on the Internet
on how to make this April the most noticed Parkinson's Disease Awareness
Month ever. Governors, like Graves in Kansas and Pataki in New York, have
officially recognized the month by Proclamation.
Estimates vary on the number of people in the United States who are
afflicted. Testa and her committee could receive up to 1.5 million feet or
more of material just from Parkinsonians themselves. "Every foot we
receive," Testa says, "represents one more foot towards a cure. PD affects
caregivers, who are usually family member, too." There is an alarming
increase among the under 40 adult, who often have young children at home.
"We are especially motivated by recent reports from the scientific world
that a CURE may be possible and our desire to enhance their work both with
our prayers and additional funding" Blake-Krebs elaborates.. Presently,
drugs, surgical therapies and perhaps a positive attitude can treat the
symptoms but with decreasing effectiveness over time for most patients. PD
is a chronic, progressive neurodegenerative disorder killing brain cells that
produce dopamine (a neurochemical controlling motor function). When 80% of
the dopamine-generating cells have died, symptoms include slowness of
movement, stiffness and/or tremor.
To participate, Parkinsonians are asked to mail their foot/ family member
of tieable material to: Parkinson's Support Group of Upstate New York (or
PSGUSNY), P.O. Box 23204, Rochestor, NY 14692-3204. Please put "Attention:
Ball" on the envelope.
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