Last December Wayne Brubacher informed the MSUD Board of Directors that he was stepping down as president. With some reservation, we accepted his resignation. Please join us in thanking Wayne and Joyce for their many years of service. Although they want to be relieved from the responsibility, we will not be allowing them to disappear from the scene! We plan on keeping them involved, especially during the symposiums.

On June 27, the MSUD Board of Directors met at the Embassy Suites Hotel in Pittsburgh, Pa. The location was chosen for two reasons: it was a central location for travel and also allowed us to check out the hotel and the area restaurants as a possible future symposium location. At this meeting, the Board was re-organized with the following officers either installed or retained: Ivan Martin-President, Sandy Bulcher-Vice President, Dave Bulcher-Treasurer, and Anne Fredericks-Secretary. Joined by board members Amy Jones and Karen Dolins, we focused our discussion on future directions and long range planning for the MSUD Family Support Group. We highlighted the following goals:
  • Become more active and more visible in the genetic disease world
  • Improve the efficiency of our communication (see Editor’s Note)
  • Investigate potential research projects to support
  • Investigate the feasibility of helping other countries with a significant MSUD population set up their own support groups

Please contact us if you have any suggestions for the Board and how we could serve you better. I‘m looking forward to seeing you next year at the Symposium.

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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