Our friend Matt invites you to this fund raising event...
Thursday, August 6
SMA Fundraiser
To raise money and awareness in the fight against SMA (Spinal Muscular Atrophy) a rare genetically inherited neuromuscular disease characterized by gradual muscle weakness due to loss of motor neurons of the brainstem and spinal cord.
There will be a $40 open bar special from 7-10pm
with proceeds going Columbia SMA Clinic and Sophia's Cure.
RSVP via evite
7pm
at:
2 W. 35th St.
(between 5th & 6th Ave.)
New York, NY
(212) 594-9343
KatwalkNYC.com
Babies with SMA Type 1 have difficulty breathing and swallowing. The lifespan of those affected by SMA Type 1 is only 1-2 years. Last year, a young woman named Lauren became involved in raising money and awareness in trying to help find a cure for SMA. In March of 2008, Lauren's best friend gave birth to Owen Vincent Shuler. On May 5, 2008 at just 8 weeks old Owen was diagnosed with Spinal Muscular Atrophy Type I (also known as Werdnig-Hoffman Disease).
On August 16, 2008, at just 5 months old, Owen passed away peacefully after battling for 34 days in the Pediatric ICU at the Columbia Presbyterian Children's Hospital of NY. Lauren decided that she was going to continue the fight against SMA.
She came up with the idea of running in marathons to raise awareness and money for the fight against SMA. She picked the Dublin Marathon last October as her first goal.
She completed the marathon and raised over $5,000 in the process.
On August 16th, exactly one year to the day that we lost Owen, Lauren, Owen's Mom Dorothy and his Aunt Moe will be running in the America's Finest City Half Marathon in San Diego.
More info at : Run4owen.com
Donations are being sent to:
The Pediatric SMA Center
Harkness Pavilion 519
180 Fort Washington Ave.
New York, NY 10032
Fightforowen.com
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