Welcome to My Site!
My
name is Haley Su Kohl. I was born on January 21, 2002, with a rare
genetic disease called Maple Syrup Urine Disease (MSUD). After a
very rough start on life, my family and friends decided to start up
the MSUD Research Foundation with the purpose if 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.
Thanks to all those who have reached out to help us, including
family, friends and strangers, we were able to achieve this goal in
August of 2004. The Amino Acid Analyzer is up and running at St.
Joseph's Hospital as of April 2005. We were very excited, to say the
least! We are now able to receive the results of my blood tests in 2
hours instead of of the 5-10 days it used to take before this
machine was made available.
Thanks so much support from friends, family and our sponsors, the 5th Annual MSUD Golf Tournament was a great success - Read More.
Register now for the 6th Annual MSUD Golf Tournament!
Find out the latest information on medical advances in gene therapy and liver transplant
See more of the exciting
things our foundation is doing today!