Transplantee families enjoyed an informal gathering at the Residence Inn, sharing information and stories.
Patients and families reunited with doctors and other caregivers at Children’s Hospital of Pittsburgh’s (CHP) Second Annual Maple Syrup Urine Disease Symposium held on May 19th, 2006 at the Wyndham Garden Hotel in Pittsburgh.

Several physicians made presentations about advancements in the treatment of MSUD patients. In 2004, CHP developed the world's first protocol for performing liver transplants in MSUD patients. This protocol led to 18 patients receiving liver transplants at Children’s, the most of any center in the world. CHP’s comprehensive protocol includes the development of specialized computerized order sets (which direct the transplant team every step of the process); the establishment of a completely sterile room needed to mix amino acids for MSUD patients in the event of a metabolic crisis; and specific formulas called total parenteral nutrition (TPN) formulas in the event of a metabolic crisis.

More than 70 people attended the symposium, including many transplanted MSUD patients and their families, caregivers from CHP, the Clinic for Special Children in Strasburg, Pa., and the University of California San Diego School of Medicine. Presentations where made by: George V. Mazariegos, MD, director of Pediatric Transplantation; Gerard Vockley, MD, PhD, chief of Medical Genetics; Hilary Feldman, PhD, of the Child Development Unit, Kevin Strauss, MD of the Clinic for Special Children and Ajai Khanna, MD, of University of Cailfornia, San Diego. Time was set aside for questions and answers following each presentation.

Elan Geffen, transplanted 1/17/06, celebrated his 22nd birthday with friends while attending the MSUD Transplant Symposium.
Physicians from Children’s and the Clinic for Special Children in Strasburg, Pa. reported on results of liver transplants for Children’s first 11 MSUD patients in April 2006 in the American Journal of Transplantation. The patients’ amino acid levels stabilized within six-12 hours of transplant and have remained stable since despite unrestricted intake of protein.

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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