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Maple Syrup Urine Disease (MSUD) is an inherited metabolic disorder. If untreated, MSUD causes mental retardation, physical disabilities and death. First described as a disease in 1954, it is a rare disorder, believed to be in all ethnic groups worldwide. The national incidence is 1 in 225,000 births.

MSUD derives its name from the sweet, burnt sugar, or maple syrup smell of the urine. The disorder affects the way the body metabolizes (processes) certain components of protein, the three branched-chain amino acids—leucine, isoleucine, and valine. These amino acids accumulate in the blood and become toxic to the brain.


MSUD Family Support Group

Parents seeking information and support prompted the first MSUD Symposium for families and professionals in 1982. It was here that families discussed the need for an organized support group.

In 1983 the first issue of the MSUD Newsletter was distributed throughout the U.S. and Canada. Now mailed around the globe, the MSUD Newsletter provides up-to-date information on the treatment of the disorder, reports on the latest research, diet information, family news and related topics. Treatment has improved, and the future continues to brighten for those with MSUD.

The MSUD Family Support Group, a non-profit organization, now includes families and professionals worldwide. It is a growing organization and continues to develop resources to meet its goals of support, education and advocacy.

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.
  • Encouraging newborn screening programs and research for MSUD.

20th Annual White Horse Beach Charity Golf Tournament

On July 29, 2017 Charlie O’Rouke and his committee held the 20th Annual White Horse Beach Charity Golf Tournament.

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Fundraising

In the 2016 survey of the membership of the MSUD Family Support Group, research for improved treatments and potential cure was rated “most important” by 90% of the responding members.

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MSUD Advocacy Update

Healthcare and issues facing the rare disease community have been at the forefront of national conversations over the past 6 months.

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I want to help out, but I don’t know how

Have you ever wanted to help out the MSUD Family Support Group but were unsure about how to contribute? The MSUD Family Support Group is actively looking for volunteers to assist with advocacy and fundraising efforts.

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Advocacy

As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

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Metformin As A Possible Therapeutic Agent In The Treatment Of MSUD

The MSUD Family Support Group has provided funds to Buck Institute for its preliminary studies investigating metformin

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A Child's Life

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