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Jody and Galen Carrington of Lawrenceburg, Indiana are very proud to announce their son, Galen Jr. age 15 (intermittent MSUD), went to Indiana's State Swimming Championships in March. Galen Jr. qualified to swim in 2 relays: the 200yd Freestyle Relay and the 200yd Medley Relay where Galen swam the butterfly stroke. His team placed 7th and 14th out of 24 teams across Indiana. Galen started his swimming career 3 and 1/2 yrs ago with East Central Swim Team, knowing only the freestyle stroke. Who could ever imagine that in just 3 short years Galen, who has MSUD, would swim at the state level! Galen has far exceeded any expectations, especially when his endurance is such an issue. Galen takes several supplements includeing Carnitine, flax seed oil, extra Thiamine and B complex vitamins which he feels helps with energy levels. (Please consult your physician before taking any supplements. The role of these supplements in increasing energy levels has not been scientifically proven.). When Galen was born, he was labeled as "classic MSUD" and was hospitalized 5 times before the age of 3. On one occasion, he even stopped breathing. As he got older, Galen was able to tolerate higher levels of Leucine and was allowed 15 grams of protein per day. Now Galen is relatively healthy, although he has trouble eating enough calories to maintain his weight while swimming 3 miles a day! Galen is currently having a hard time switching formulas since MSUD Diet Powder will no longer be available.

Congratulations to Galen and continued success with his swimming career!!!

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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Transform

A Child's Life

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