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.

From The Editor

Hello to my MSUD family! The power of this family hit home this summer, when Hannah (Classic MSUD age 23 years) and I visited Israel.

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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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Cambrooke Foods Hosts Local Event

Cambrooke has been doing cooking demonstrations, social meet ups and educational events for patients, their families and the clinician’s that support them for many years.

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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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Metformin As A Possible Therapeutic Agent In The Treatment Of MSUD

The MSUD Family Support Group has provided funds to Buck Institute for its preliminary studies investigating metformin

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MSUD Awareness Day

Now more than ever before we are hearing about National Awareness Days which are set by organizations or the government to bring attention to issues of importance.

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A Child's Life

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