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.

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

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NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

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Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

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Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

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Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

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From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

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MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

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The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

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19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

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Change the lives

of MSUD adults and children

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