Jordan, my 23 year old son with MSUD, and I traveled to Houston, Texas again in June for the last phase of the Buphenyl trial  (see last newsletter  Vol 31, Number 1). For two weeks prior to going to Houston, he took the opposite medication (Buphenyl or placebo) of what he took earlier this year. Jordan didn’t think that this drug tasted as bad as the one he took previously and he tolerated it better.

We spent two nights at the research center and again blood and urine tests were done. His intake of formula, food, and snacks was controlled by the staff and was very similar to what he consumed during the first phase.  Jordan was comfortable during his stay and spent time doing his schoolwork, watching TV, and playing games.

If you or your child has been contemplating participating in the study, it is not too late. There is time available this fall or winter. Dr. Lee would like those with Mild or Classic MSUD with a variety of mutations to participate. If you would like to talk to me or Jordan, feel free to email me at This email address is being protected from spambots. You need JavaScript enabled to view it. or call at 740-972-5619. If you would like to talk to Mary Mullins, Dr.Lee’s research nurse, she can be contacted by email at This email address is being protected from spambots. You need JavaScript enabled to view it. or phone at 832-822-4263.

Dr. Lee expects to be in the data collection phase for approximately 2 years.  After that he will analyze his data and share his results.

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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A Child's Life

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