April 30, 2010
Superstition Springs Golf Club
Haley Su Kohl was born on January 21, 2002 with a rare genetic disease called Maple Syrup Urine Disease (MSUD). After a rough start on life, her family and friends decided to start the MSUD Research Foundation with the purpose of helping her 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 allow early detection and successful management of MSUD.
The MSUD Research Foundation sponsors a golf tournament each year to raise funds for ongoing research into MSUD, an inherited metabolic disorder that, if untreated, causes mental retardation, physical disabilities, and death.
The MSUD Research Foundation has funded an amino acid analyzer, used in the diagnosis and management of the disease, at St. Joseph’s Children’s Health Center, and is working toward establishing a low-protein store at the hospital.
For more information about the MSUD Research Foundation, go to www.msudresearchfoundation.org.
