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Brigitte Hédouin's Fundraiser:

Cure Spinal Muscular Atrophy

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Brigitte Hédouin via Crowdrise
October 12, 2011

Max, we want to help your association "cure spinal muscular atrophy" and we wish you good luck for the marathon ! you are the best !  See more

BENEFITING: Spinal Muscular Atrophy Foundation

ORGANIZER: Maxime

EVENT: 2011 ING New York City Marathon - $1 Mil a Mile

EVENT DATE: Nov 06, 2011

Brigitte Hédouin

THE STORY:

Maxime Jeanne wrote -

Spinal Muscular Atrophy (SMA) is a genetic neuromuscular disease characterized by muscle atrophy and weakness. The disease generally manifests early in life and is the leading genetic cause of death in infants and toddlers. SMA is caused by defects in the Survival Motor Neuron 1 (SMN1) gene that encodes the SMN protein. The SMN protein is critical to the health and survival of the nerve cells in the spinal cord responsible for muscle contraction (motor neurons).

This disease affects thousands of families in the U.S. and around the world and causes premature deaths of children. Many people are carriers of the recessive gene and could be affected, without there being any cure for it. My wife and I are expecting a little boy shortly after the NYC marathon and thought for a moment that we would be affected. Thankfully, we are not, but wanted to help families who are not as lucky as us.

All donations (less the Crowdrise collection fee) will be handed over to the SMA Foundation of New York City, which is doing a great job helping research towards the development of a treatment!

 

PS: If you are interested, there was a recent article on Bloomberg about SMA (there is also a TV piece about it) http://bloom.bg/p64erU

http://www.smafoundation.org/

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Fundraise for this Campaign

The Team: $2,046 TOTAL RAISED SO FAR

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Maxime Jeanne

Amount Raised

$2,046

 

68% Raised of $3,000 Goal

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Nick Manocha

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Kerry Shaw

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Brigitte Hédouin

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Benjamin Fiaud

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