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.

I want to help out, but I don’t know how

Have you ever wanted to help out the MSUD Family Support Group but were unsure about how to contribute? The MSUD Family Support Group is actively looking for volunteers to assist with advocacy and fundraising efforts.

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In the 2016 survey of the membership of the MSUD Family Support Group, research for improved treatments and potential cure was rated “most important” by 90% of the responding members.

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Our Story

On April 23 2015, our precious firstborn son Eliyahu Tuvia was born in Jacksonville, FL. All seemed well and we took our bundle of joy home.

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As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

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Indigo Charlie Mays - Variant MSUD Age 4

Meet our girl Indigo Charlie Mays. After a smooth pregnancy and delivery, she was born on July 21st, 2013 in Seattle, WA.

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Adjusting Protein In An Adult With MSUD

A little over a year ago, in January, Jeff was just not himself. He had limited energy, was not eating well, and often appeared slightly agitated.

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A Child's Life

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