Photo:Scott Foster
A Letter by Butch Foster:
Hello everyone!
I hope you are all healthy and doing well. It is that time of year again when Team Scott rides for our orphan disease MSUD in his memory. I again will be joined by my brother-in-law Steve Healy and my grand turismo friend Billy Goodwin.
The orphan disease center at the University of Pennsylvania medical center will again be matching the first $30,000 the MSUD Family Support Group raises to fund a research project for a cure for MSUD.
As I stated last year, Billy and I will be riding 75 miles this year for my 75th birthday. God willing, I hope to be able to continue to bike for Team Scott and my daughter Katie and all the children with MSUD for many years to come.
So many of you have been with me and my family and supported our efforts to find a cure for MSUD for what seems like an eternity. Your continued support has given me the inspiration to strive harder in my efforts to find a cure.
Please help us make this year’s appeal as successful as our past bike rides. You can donate online at our giving page which is http://givingpages.UPENN.EDU/CUREMSUD. You can also make out your tax-deductible check donation to: Trustees of the U of Penn and mail it to me c/o Butch Foster, 199 Surf Drive, Falmouth MA 02540.
Thank you,
Butch Foster
Former owner of Balls Sq Bowling
Remembering Scott Foster:
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)
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
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
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