As of this writing, has 66 registered members worldwide.

As parents and patients of MSUD, we know that communication is key to better treatment and help for those in need. Our goal is to make better use of the tools available on the internet and other new media to better serve the MSUD community. The website strives to bring the informed and non-informed together into a single place to share ideas, feedback, comments and general knowledge about MSUD, a disease so rare that specific information is lacking on established websites. Contributions from our members fill that gap, and our publications will bring an understanding of MSUD to a greater audience.

The website was re-designed in August 2009 to better serve the MSUD community. Many enhancements were made to allow members to contribute their thoughts and ideas. Enhancements include:
  • Finding information using search engines such as yahoo, google, msn and the ability to scour through newsletter articles using a search tool within our website (top right).
  • Member driven content which you can edit. Content must be approved.
  • Question and answer forum – a members only area where registered users are free to post questions and answers.
  • Events posting – fundraising, gatherings, meetings and more.
  • Professionals' directory allowing those in need to find the right doctor or other MSUD specialist (dietitian, physician, geneticist).
Other noteworthy features:
  • Donations can now be made online. We use 'Paypal' as our payment gateway which also allows non-paypal users to pay with their credit card/checks.
  • Take a survey by voting in our polls. Each month, we will feature a new question for members and non-members to get feedback on current hot topics.
  • Directory of MSUD related companies/groups. In this area, you'll find more information about MSUD related products, organizations, companies and friends of MSUD Family Support Group. If you know a company/product/organization you'd like to promote, please become a member to start posting.
  • A new video area will be coming soon. It will feature MSUD related videos from all over the internet summarized into categories.

If you would like to see something we haven't thought of, please contact the administrator at This email address is being protected from spambots. You need JavaScript enabled to view it.. We hope to see you as members soon.

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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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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From The Chairman’s Desk

On July the 21st the MSUD Board of Directors traveled to Bethesda, Maryland for our annual Board meeting. We stayed at the Hyatt Regency in Bethesda.

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My Trip To Israel

I met Avi, Dikla, and Tamar Starr last year at the MSUD Symposium in Raleigh, NC. Tamar, classic MSUD, was 2 ½ at the time, and they invited me to come to Israel and stay with them for a year.

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In The Professional Journals

A Patient with MSUD: Acute Management with Sodium Phenylacetate/Sodium Benzoate and Sodium Phenylbutyrate

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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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A Child's Life

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