Emily
Pare

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TotalRaised

$30

MyGoal

$2,000


Goal Progress
2%
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MyReason

Hannah's Hope Fund

Welcome to Team Hannah's Hope Fund and Justin's Triumph over GAN. We raise funds to support the development of a treatment and cure for Giant Axonal Neuropathy (GAN), and to be the resource for doctors, scientists and families world-wide.  GAN is an extremely rare and fatal genetic disease.  There are only 63 known cases world-wide.  The life expectancy for these children is only into their 20's.  In 2015, the FDA approved an experimental trial -- so far, 2 patients have been injected.  Help us raise money to continue our search for a cure for GAN.

 

Emily's Spin-a-thon for GAN
July 19, 2014
 My Indoor Cycle, Houston, TX 77098

We will be spinning to help raise money for a cure for Giant Axonal Neuropathy (GAN). It is a fatal inherited genetic disorder that affects 2 local children. The Clark’s found out their son Justin had the disease in the fall, and since curly hair is one of the indicators of the disease, they had their younger daughter, Lexi (age 9), tested and found out she also has the disease.  Only about 50 children in the world have this disease and two of them are here. Without a cure, most of these children will die in their 20's. The disease takes away their ability to walk, talk and eventually breathe.

Justin's twin brother, Jared (who does not have the disease) did a ½ Ironman Distance Triathlon at age 12 to help raise awareness and money to help save his siblings. Along with participating in the charity ride, please consider making a tax-deductible donation to Hannah's Hope Fund (the non-profit whose sole mission is to find a cure for GAN).  

I'm spinning to raise money because I want Justin and Lexi to be able to continue riding their bikes just like all kids like to do. Help us find a cure. 

All proceeds from your $30 ride entry will go directly to Hannah’s Hope Fund; along with any further donations you may consider to make.

Any amount, great or small, makes a difference.

  Every dollar we raise, gets us 1 step closer to a cure.





Donations2Date: $30

Donor Donation Amount Donation Date Comment
Geoffrey Hardy $30.00 8/15/2014 Good luck!
* offline donation