The Genetic Metabolic Dietitians International (GMDI) and the South Regional Genetics Collaborative (SERC) are in the final stage of completing their nutrition management guidelines for MSUD under the direction of Dianne Frazier. (see Vol 30, Number 2, Fall 2012 for more details). The guidelines will help standardize treatment and provide consistency in care.

The GMDI wrote a formal request to the MSUD Family Support Group for a small grant. they requested funds to offset the cost of a face to face meeting of several GMDI workgroup members and one member of the MSUD Family Support Group. During this meeting, the toolkit that is being developed will be evaluated and modified as needed. Eventually the tools will be accessed by clinics, patients, and families. To get a voice from the MSUD community, GMDI has enclosed a short survey in this newsletter. You are asked to suggest areas in MSUD management that you feel may benefit from more resources. It will be important that you return the survey as soon as possible so that your ideas can be brought to the meeting.

Special thanks to Dean and Amy Jones, Msud parents, of Barberton, Ohio for funding this project from money raised during their “Night at the Races” fundraiser this past fall. And special thanks to all of the GMDI members that volunteered many hours to develop the guidelines.

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.

Read More

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.

Read More

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.

Read More

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.

Read More

Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

Read More

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.

Read More

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.

Read More

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

Read More

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.

Read More


A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates