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.

NBS-MSUD Connect: Advancing MSUD Research And More


Rare disease registries have received attention in recent years because of the many ways in which they can benefit the rare disease community.

Read More

Galen Carrington Classic MSUD age 27

Galen Carrington is a 27 year old Indiana resident who has classic MSUD. He underwent liver transplantation 5 years ago at Children’s Hospital

Read More

In The Professional Journals

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

Read More

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.

Read More

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.

Read More

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.

Read More


A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates