Ed Meyertholen

Running on Empty: Helping the Kennedy's Disease Association

Ed Meyertholen's fundraiser for Kennedys Disease Association

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I am running the San Antonio Rock and Roll Marathon to raise money for the Kennedy's 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.


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Organization Information

Kennedys Disease Association
PO Box 1105
Coarsegold, CA 93614

Phone
(559) 658-5950

Web
http://www.kennedysdisease.org

Email
info@kennedysdisease.org

Mission
PLEASE HELP US FIND A CURE!

EIN 770552005

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$1,785 raised
21 DONORS

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