Giant Axonal Neuropathy

9/23/2012 00:49

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In March of 2008, Lori Sames learned that her daughter, Hannah, then age four, had Giant Axonal Neruopathy. 

GAN a rare genetic disorder that slowly takes away one's ability to walk, use one's hands, speak, swallow and is terminal usually by the time the child is in their late teens.  Lor was told there is no cure and no hope for her daughter.  After grieving for a few days, she and her husband, Matt, said, "someone has to be the first perosn to beat this desease, and it is going to be Hannah."  By August of 2008, Hannah's Hpe for GAN, a 501c3, was formed and hosted the first International Symposium on GAN in Boston,MA.  Professionals from around the globe joined forces and agreed to work together to find a treatment.  In an incredibly short amount of time, a treatment has been found, and a clinical trial is ready to begin in 2013.

Their WISH is to continue the hope and provide a cure fo this desease not just Hannah but for all the chirldren around the world suffering from GAN.  WE are out of money and need support.  Doris Buffet, through her Sunshine Lady Foundation has offerd a matching gran of $450,000.  THis is all or nothing and we need to match this by April 2013.

 

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