A Letter by Butch Foster:
Later this spring I will be traveling to Philadelphia Pennsylvania to participate in a bike ride to raise money for Maple Syrup Urine Disease, MSUD research. MSUD is a rare incurable metabolic disorder that only affects 1 in 180,000 individuals. Children with MSUD can not break the protein in their body down. They require a special low protein diet, expensive amino acid supplements, and much medical attention.
I am on the Board of Directors of the MSUD Family Support Group. Our board is committed to finding a cure for this disease. The University of Penn, runs the Million Dollar Bike Ride to raise money for rare disease research. They will match all money raised, dollar for dollar, if we raise 20,000 or more. With the money raised, we will develop a request for proposal and the Penn Medicine Orphan Disease Center will administer the research project.
All donations will be matched by the University of Pennsylvania
If you would like to sponsor me with a tax-deductible donation, for Team Scott, you can do so by making a check out to the, “Trustees for the University of Pennsylvania”. Please mail the check payable to Trusses to the University of Pennsylvania at:
199 Surf Drive
Falmouth MA 02540
Or by going to the University of Pennsylvania’s giving page to donate: givingpages.upenn.eud
Former owner of Balls Sq Bowling
Scott Foster, the son of Herb and Diane Foster was born in 1971 He was the first person born in Massachusetts to be diagnosed with Maple Syrup Urine Disease (MSUD) by the state’s newborn screening program.
Scott’s first two years were very difficult. He was a frequent patient in the hospital, requiring visits every week or so. He became very sick and was hospitalized for nearly two months before recovering and going home.
For the next 20 years Scott did very well leading as normal a life as possible for a person with MSUD. He loved sports of all kinds, played baseball, was an excellent bowler and also worked at the family bowling business. After graduating from high school Scott attended the local community college, coming within a course of completing his Associates degree–a remarkable achievement for an individual with MUSD. Following in his dad’s footsteps he interned at the Metropolitan Boston Transit Authority and was hired as a motorman on the red line. This was a great responsibility carrying thousands of passengers every week. He was so proud to be working for the MBTA. He also had a steady girlfriend and looked forward to his future.
After a brief illness, Scott succumbed to complications of MSUD and passed away when just 22 years old. He was a very caring person who would go out of his way to help someone in need. He is greatly missed by his family and all those who knew him.
Maple syrup urine disease (MSUD) is an inherited disorder in which the body is unable to process certain protein building blocks properly. The condition gets its name from the distinctive sweet odor of affected infants’ urine and is characterized in the neonatal period by poor feeding, vomiting, lethargy, and developmental delay. Maple syrup urine disease (MSUD) is inherited, which means it is passed down through families. It is caused by a defect in 1 of 3 genes. People with this condition cannot break down the amino acids leucine, isoleucine, and valine, leading to a toxic buildup of these chemicals in the blood .
In the most severe form, MSUD can damage the brain during times of physical stress (such as infection, fever, or absence of food). Some types of MSUD are mild or come and go. Even in the mildest form, repeated periods of physical stress can cause mental disability and a toxic build-up of leucine. If untreated, MSUD can lead to seizures, coma, and death.
MSUD affects an estimated 1 in 185,000 infants worldwide, making it a rare disease.
The MSUD Family Support Group is a non-profit 501 (c)(3) organization for those with MSUD and their families and includes health-care professionals and others interested in MSUD. At present, the Family Support Group has a membership of approximately 500 families, of which 115 reside outside of the United States. The U.S. members are scattered across 43 states, with concentrations in the eastern states, notably Pennsylvania.
The MSUD Family Support Group is dedicated to: Providing opportunities for support and personal contact for those with MSUD and their families; distributing information and raising public awareness of MSUD; strengthening the liaison between families and professionals; and encouraging newborn screening programs and research for MSUD.
The MSUD Family Support Group also funds research to improve treatments available to those with MSUD and research to cure MSUD.
Click on link below to donate: givingpages.upenn.eud