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This issue of the newsletter follows up on our last issue with a continued look at ongoing research into treatment for MSUD. In addition to a summary of recent studies, Sandy Bulcher tell about her son Jordan’s experience as a subject in Dr.Lee’s buphenyl study.

Those of you who attended our last symposium heard Dr. Gerald Downes describe his work with MSUD zebrafish. My daughter Hannah I visited his lab, where we saw firsthand what zebrafish look like, and how zebrafish embryos can be used to help identify drugs which might improve treatment.

We thank Sharlene Balinsky for sharing her experiences when she was diagnosed with an ovarian cyst with us, and Shohreh Heydarian Bonyadi for sharing her son Hootan’s story and their family’s experience with MSUD in Iran.

I ask you to think about the many wars in which you can help your MSUD community.
  • Rare Disease Day id on February 28. Visit rarediseas.org or contact This email address is being protected from spambots. You need JavaScript enabled to view it. to find out how you can help advocate so MSUD and other rare diseases are not forgotten.
  • Volunteer for the newsletter. Glenda Groff is retiring from her post as Diet Wise editor, and a replacement is needed.
  • Raise funds to help support important research.
Send us your personal stories.

I hope to hear from you! Warmly, Karen Dolins.



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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Transform

A Child's Life

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