When parents of children with MSUD notice puzzling, abnormal behavior, it raises many questions. Is the behavior related to their metabolic condition? Do other parents notice the same behaviors? Do all children with MSUD manifest the same behavioral patterns or do the genetic mutation, the amount of damage before diagnosis, degree of metabolic control, protein deficiencies or other factors make a difference?

Hopefully, a proposed behavioral study will provide some insight on MSUD behavioral issues. Dr. Dean Danner from Emory University in Atlanta, Georgia and Wendy Packman, J.D., Ph.D. from San Francisco, California plan to do the study with the cooperation of the MSUD Family Support Group. The Support Group has given some initial financial support to begin the study. The doctors will soon send questionnaires to validate the results of an earlier study begun in 1996. No one is obligated to participate, but a quick and thorough response would be very helpful. Dr. Danner will report on the progress of the study at Symposium 2002 in July.

The study will use standardized child assessment evaluation forms filled out by parents and/or the affected individuals along with a companion form filled out by the child's teacher to evaluate behavior patterns. The completed forms will be scored and evaluated independently by a Certified School Psychologist and a Clinical Psychologist.

The results of this study will provide the first evaluation of behavior patterns in these individuals. Their molecular genetic abnormality has already been defined by completed laboratory studies and the results of the behavior study will be aligned with their specific gene defect. The benefit will be felt most readily by new individuals identified with this genetic disorder. In addition, caregivers will be able to anticipate and therefore better manage the psychological needs of these individuals.

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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