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. Melvin was born July 31, 1965 to Margrett Tim and Eunice Carruth. In addition to MSUD, Melvin was born blind, deaf and with a club foot. The first couple weeks of his life were filled with constant crying and intermittent body spasms. Eunice took him to Grady Hospital and he was eventually referred to Bellevue Hospital in New York. This is where Melvin was diagnosed with MSUD. He underwent several surgeries and had to wear casts and braces for several years. (Oh, did I tell you the Doctors advised my parents not to get too attached to Melvin because they didn’t think he would live past 6 months). Melvin continued to develop and get better. Amazingly, his sight and hearing recovered. He eventually attended high school and received his high school diploma. Today Melvin is 52 years old and is doing well. He lives with our84 year old mother and attends the adult day care at Frazer Center in Atlanta, Georgia. Our dad died in 1985 of pancreatic cancer. He is treated at Emory University School of Medicine.

Melvin had a younger brother, Kenneth Carruth, who was born June 7, 1969 and who was also diagnosed with MSUD. Kenneth grew up and did well also. He was married and worked several jobs at Kroger and different restaurants. Kenneth would occasionally have seizures and have to be hospitalized. Of course, once he left home his diet was not well controlled. Kenneth passed away on May 21, 2013. An autopsy was performed because he died suddenly and because of his young age. The autopsy couldn’t find anything remarkable. He had a seizure earlier that day and laid down and passed away.

I was born on October 2, 1966 (between them) and was a perfectly healthy baby. In 1990, I was diagnosed with Multiple Sclerosis. I am married with 3 daughters and live with my husband in Stockbridge, Georgia. I code medical records for a living. Now I am doing this work at home.

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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