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.
Support Group Funds MSUD Nutrition Management Guidelines
- Written by Sandy Bulcher