EMMA- Cure For a Future Shwachman Diamond Syndrome

EMMA- Cure For a Future Shwachman Diamond Syndrome

From Emma Taylor

I'm raising money to fund research and find a cure for a rare genetic disorder I have Shwachman Diamond Syndrome.

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When I was 5 months old I was diagnosed with Shwachman Diamond Syndrome which primarily effects my bone marrow, white blood cells and pancreas.  It is a rare genetic disorder and when I asked our Hematologist what we can do to help, she said bluntly, "Money" to fund research.  It is a relatively new gene mutation classified in 2001 and there has been so much progress in the relatively short amount of time, I feel a breakthrough is coming soon.  I am raising money to support the foundations that support SDS and most importantly fund research grants that are looking for a cure for SDS.  Your donations will go to the SDS Foundation http://www.shwachman-diamond.org/ that supports the research grants searching for a cure.  $25,000 is a lofty goal, it represents the value of a grant and my parents will work hard to fundraise in different ways to make it. If you are able to donate or just spread my cause, THANK YOU! - love emma

For updates and progress check out my blog: http://www.caringbridge.org/visit/emmasheataylor

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