Robin (left) and Libby (right) Stone, with friend, Jade Prescott, talk with Denise Pinskey at "break-out" session at the MSUD Symposium.
My daughter, Libby (age 21), and I attended the symposium in Ohio. Our family has been thinking about and gathering information concerning the liver transplant for the past two years, and we were excited to learn that this was going to be a main focus of the symposium. We, as a family, have been praying that God would help us to make the right decision about going forward with the liver transplant. When Dr. Morton spoke that last day, Libby and I both felt immediately, that this was the answer we had been waiting for. We have since moved forward, and Libby had her liver transplant evaluation the first week of August. Our family is so excited that Libby will soon have a new lease on life, but are certainly aware that our blessings will also be someone elses loss.

We would like to thank everyone involved in helping with the symposium. We really appreciate all the time and effort it takes for you to make this happen. It truly was one of the best. The accomodations were excellent and the information was outstanding. Having the extra time to spend visiting with the other families has always been such a rewarding time. We have been attending every symposium since the one held in Montreal, and our bond as an MSUD family strengthens each and every year. We will be looking forward to seeing all of you again in 2008.

Robin and Libby Stone, Desoto, KD

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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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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