Million Dollar Bike Ride- Maple Syrup Urine Disease Fund
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Living With MSUD
Fundraising goal $2,500.00
Recent donations (9 donations)
Name DescendingX Amount
Ron and Denise Pinskey $100.00
Anonymous $200.00
Paula & Azzy Reckess $250.00
Arash $75.00
Dr. Ann Donahue $25.00
Recent donations
Top donors (9 donations)
Paula & Azzy Reckess $250.00
Anonymous $200.00
Yaron Peled (Noa, classic) $100.00
Ron and Denise Pinskey $100.00
Arash $75.00
2019 Million Dollar Bike Ride For MSUD Research

MSUD Patients and Families
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.

Living with MSUD is difficult for patients and families. Diets must be very strictly controlled. 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.

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. MSUD affects an estimated 1 in 185,000 infants worldwide, making it a rare disease. As with most rare diseases, research for MSUD lags far behind other diseases due to technological and funding limitations.

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 2019 is to fund at least one research project with $50,000 for improved treatments or a cure for MSUD.

The Million Dollar Bike Ride
Sponsored by The Penn Medicine Orphan Disease Center (ODC), The Million Dollar Bike Ride brings over 600 cyclists and volunteers to Penn's campus to ride across the Greater Philadelphia region. In five years, the MDBR's 25+ teams have raised over $8 million to fund research grants for the diseases they represent. The ODC ensures that 100% of the funds raised goes towards these pilot grants, with no overhead taken out.

Provided that the team goal is achieved The ODC will match dollar-for-dollar money raised by the cycling participants, up to $30,000.

How Can I Participate?
There are several ways to participate in the Million Dollar Bike Ride and fund-raise for Team Scott:

  • DONATE through this website. No matter how much or how little you are willing to donate, every dollar counts towards finding better treatments and a cure for MSUD.
  • RIDE IN THE PHILADELPHIA EVENT: Register to ride in the event in Philadelphia on June 8th and help us raise money and awareness. Registration fee is only: $25 (but must raise at least $250 before the event). Fundraising cyclists will receive an official 2019 MDBR cycling jersey and a T-shirt. Must register by March 10 to receive your jersey at the event.
  • ENCOURAGE your friends and family to visit one of these web pages to make a donation.
  • BE A VIRTUAL RIDER: Can't make it to Philadelphia on June 8th? No problem. Create your own bicycle route in your hometown, ride there to raise money and awareness and donate the proceeds on this or other pages. If you want, go ahead and register to receive an official 2019 MDBR cycling jersey and a T-shirt and we'll arrange to have it sent to your home.
Donation messages
In honor of all affected by MSUD! --Ron and Denise Pinskey
In honor of Galen Carrington Jr who was "cured" of MSUD with a liver transplant! --Jody Carrington
Best wishes to all the MSUD patients and their families. --Jerry Zhao and his family (Xiayun Zhao & Yanjun Zhao)

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Post fundraising progress | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser