Running on Empty: Helping the Kennedy's Disease Association
A fundraiser supporting Kennedys Disease Association
Kennedy's Disease (also known as Spinal Bulbar Muscular Atrophy, SBMA, or Kennedy's Syndrome) is a rare and currently incurable and non-treatable X-linked recessive genetic progressive neuromuscular disease. Both the spinal and bulbar neurons are affected causing muscle weakness and wasting (atrophy) throughout the body which is most noticeable in the extremities (legs/arms), it is especially noticeable in the face and throat, and causes speech and swallowing difficulties, major muscle cramps as well as other symptoms.
I have know that I have had Kennedy's Disease for 10 years now. Over the years, the progression of my disease seems to be slower than that of others with KD and I am still able to run although I have lost some speed. I feel blessed that I can still do this as most men with KD at my age cannot walk 100 yards much less run 26 miles. Now, what does this have to do with you? I am training to run the San Antonio Marathon this coming November and I am hoping to raise money for the Kennedy's Disease Association, a group of individuals with KD and their families and friends. The KDA is a nonprofit organization with the primary aim to cure KD. KD is very rare and has been designated an orphan disease which essentially means the amount of research dedicated to KD is minimal. The KDA attempts to overcome this by funding research grants aimed specifically at KD. We have been quite successful - 70% of our funds go directly into these grants - the bad news is that we are a small group and need money to do our work. So please consider sponsoring me in this run.
Donors' Wall
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Bruce Gaughran
Ed, we appreciate all that you do for us. Run, Ed, Run!
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LOU TUDOR
Good luck, Ed...and thank you!
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Mike Goynes
Thanks for all that you're doing for us Ed - you're the BEST!
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Isabella Palazzolo
Ed, i'm really proud of you. i've shared this link on my Facebook, hope you don't mind! Good luck! Isa
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Lise Munsie
Hi Ed, We met at the GRC this year! I think it's awesome that you are doing this! Good Luck! Lise







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