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Genetic and Metabolic Dietitians International (GMDI), the professional group to which most of the dietitians you work with belong, holds conferences every other year.

This April I represented our group at their conference “Metabolic Nutrition in the 21st Century: Looking Towards the Future,” held in Scottsdale, Arizona. The purpose of my attendance was to exhibit and network; to teach dietitians about our support group, learn about advances in the field and network with representatives from other support groups.

As an exhibitor, I provided attendees with our brochure, research highlights, information about our group, and information about our upcoming symposium. Most were familiar with our group but weren’t aware of all we do. Others did not know about us and were happy to take information so they could refer families with MSUD to us for support. Dietitians expressed an interest in partnering with us for the development of educational materials in different languages, especially Spanish and Arabic.

In speaking with representatives of other support groups, I found that advocacy and fundraising were key focuses. While the PKU organization is unique in that they have a paid executive director, most rely on the dedication of volunteers as we do.

At this conference I learned of the Metabolic Diet App Suite, developed by dietitian Keiko Ueda and colleagues at British Columbia Children’s Hospital. Please read Keiko’s article in this newsletter describing the app, as I believe many of you will find it useful in dietary compliance.



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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