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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. The trip came about because Hannah was invited to stay with Avi and Dikla Starr, who attended our Symposium last year with their daughter Tamar (Classic MSUD age 3 ½ years). She spent 5 weeks with them and traveled throughout Israel to visit other MSUD families (see Hannah’s article describing her trip on page 6). I joined her for the last 11 days. We received warm welcomes from everyone we met. Perhaps most poignant, we met a couple from India who were in the country when their son Krish (classic MSUD age 4 months) was born. Knowing that treatment in India is poor, they were able to extend their visa and hope to get a liver transplant.

In addition to editing the newsletter, I also serve on the Board as Secretary and have been working to expand our advocacy efforts. Please read the articles describing these efforts and learn how you can help. Also included are research updates and plans for fundraising, which will enable us to support promising research projects.

Thank you to Susan Mays, Sarah Dworkan, Jody Carrington, Hannah Dolins, and Anne Fredericks for your family stories. Remember, we all enjoy hearing each other’s stories and important events. Please don’t hesitate to contact me at karen.dolins@yahoo. com if you’d like to tell us yours.

Finally, a big thank you to our advertisers Cambrooke Foods, Vitaflo, and Nutricia for their continued support.

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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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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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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Fundraising

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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Adjusting Protein In An Adult With MSUD

A little over a year ago, in January, Jeff was just not himself. He had limited energy, was not eating well, and often appeared slightly agitated.

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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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Transform

A Child's Life

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