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 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.

From The Chairman’s Desk

On July the 21st the MSUD Board of Directors traveled to Bethesda, Maryland for our annual Board meeting. We stayed at the Hyatt Regency in Bethesda.

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Sweet Odyssey

Artur Santos was born on January 18, 2002, the second son of Soraya and Idario Santos. They never imagined how their lives were about change as the second baby arrived.

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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 Professional Journals

A Patient with MSUD: Acute Management with Sodium Phenylacetate/Sodium Benzoate and Sodium Phenylbutyrate

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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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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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A Child's Life

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