My name is Haley Su Kohl. I was born on January 21, 2002, with a rare genetic disease called MSUD (Maple Syrup Urine Disease). After a very rough start on life, my family and friends decided to start up the MSUD Research Foundation with the purpose of helping me and others with rare genetic diseases. The MSUD Research Foundation is a non-profit organization committed to promote the need for ongoing research of MSUD in an effort to ensure all families are afforded the technology, services, education and treatment available to enable early detection and successfully manage MSUD. Our 1st goal for the Foundation was to raise the money necessary to purchase an Amino Acid Analyzer Machine (include link to AAA information). Thanks to all those who reached out to help us, including family, friends and strangers, we were able to achieve our goal in August of 2004. The Amino Acid Analyzer is up and running at St. Joseph’s Hospital as of this past April 2005. We are very excited, to say the least! We are able to receive the results of my blood tests, which are drawn every other week, in 2 hours instead of the 5-10 days it used to take before this machine was available.
© 2003-2005 MSUD Research Foundation -
PO Box 2512 -
Gilbert, Arizona 85299
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