Million Dollar Bike Ride- Maple Syrup Urine Disease Fund
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The Million Dollar Bike Ride
   
Fundraising goal $10,000.00
Recent donations (62 donations)
Name DescendingX Amount
Thomas Hellen $40.00
Thomas Clinton $100.00
Norma Tuckwood $50.00
Anonymous $500.00
J.M.T. Inc. $500.00
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Top donors (62 donations)
Butch foster This amount includes donations indented below $1860.00
   Anonymous
   Alison and Mark Fernandes    $100.00
   Ms. Erin Driscoll
   Jim Matthew    $50.00
   Glynn    $100.00
   Mr. Mark Sethares    $100.00
   Kelly & Sue Plath    $150.00
   Charles & Cyndie    $100.00
Mr. Paul Trane $1500.00
Erik and Christine Fleming $500.00
Adrian Family $500.00
Mary Ellen and Bob Oleary
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2021 Million Dollar Bike Ride For MSUD

Scott Foster
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. After passing, his organs were donated to the New England Organ Bank to be used to improve the lives of others. Over twenty individuals received Scott's organs, including his heart.

Scott 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.

Funds raised for the Million Dollar Bike Ride will be used to support research for improved treatments and a potential cure for MSUD.
Our goal for 2021 is to fund at least one research project for improved treatments or a cure for MSUD.
  • Although some MSUD patients are able to have a liver transplant, which allows them to live without fear of death from MSUD complications there is otherwise no known cure for MSUD.
  • Special metabolic foods are essential for survival, but are expensive and not always paid for by insurance.
  • Individuals with MSUD remain at high risk for developing episodes of acute illness necessitating immediate medical intervention.
  • Research for most rare diseases, including MSUD, lags far behind other disease due to technological and funding limitations.
  • The Orphan Disease Center At The University of Pennsylvania is securing philanthropic and corporate donations that will be used to match dollar-for-dollar money raised by cycling and other participants.
Donation messages
Love you and miss you Scott --Mrs. Lori Newton
Team Scott!! --Kelley Healy
Butch, keep up the great work. --Bill Roche
Supporting the Foster family --Mrs. Inge Pelka
Happy to help. --Jim Matthew
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delrossi@upenn.edu | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
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