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. As a result, the MSUD Family Support Group Board has adopted a goal to promote and support research that may result in better treatments and a cure for MSUD. Over the next two years, the board wants to accomplish the following:

  • Implement a patient registry for MSUD patients and increase enrollment in the patient registry to the majority of the family support group membership.
  • Promote use of the patient registry to MSUD researchers.
  • Facilitate new MSUD research projects.

For the past decade, Mr. Herb Foster and a few others have raised substantial donations providing some “seed money” to get this effort started. To sustain momentum and fund the registry and new research projects, we will need to take on the responsibility to raise additional funding. Later this year the board will initiate a number of fundraising activities to support the research objectives, which may include:

  • An annual fundraising appeal explaining current MSUD research, recent accomplishments, and a request for donations to continue the work.
  • One or more on-line or silent auctions of donations such as sports memorabilia, art, services, vacation packages, etc.
  • Other activities, such as “bowl-a-thons, walk-athons and other kinds of “thons”, golf tournaments, and participation in other fund-raising activities championed by MSUD families across the country.

To support these goals, we need as many of our members as possible to participate in these efforts! Over the next several weeks, we will be reaching out to you to communicate how you can volunteer and help to achieve these accomplishments. Expect to receive a call for volunteers in the near future!

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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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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From The Editor

Hello to my MSUD family! The power of this family hit home this summer, when Hannah (Classic MSUD age 23 years) and I visited Israel.

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Indigo Charlie Mays - Variant MSUD Age 4

Meet our girl Indigo Charlie Mays. After a smooth pregnancy and delivery, she was born on July 21st, 2013 in Seattle, WA.

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Sweet Odyssey

Artur Santos was born on January 18, 2002, the second son of Soraya and Idario Santos. They never imagined how their lives were about change as the second baby arrived.

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NBS-MSUD Connect: Advancing MSUD Research And More


Rare disease registries have received attention in recent years because of the many ways in which they can benefit the rare disease community.

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A Child's Life

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