We are publishing our newsletter electronically for the first time!

Many organizations have moved away from print newsletters due to the expense involved in printing and mailing. As mentioned in earlier issues, we have elected to continue with a print newsletter for Summer/Fall while using our eblast list to publish a Winter/Spring newsletter electronically. We are also using our eblast list to communicate with you on timely issues so you can expect to hear from us more frequently than in the past.

This enewsletter contains research updates, information about our next Symposium in June 2018, and information about rare disease advocacy and how you can help.

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.

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MSUD Awareness Day

Now more than ever before we are hearing about National Awareness Days which are set by organizations or the government to bring attention to issues of importance.

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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

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20th Annual White Horse Beach Charity Golf Tournament

On July 29, 2017 Charlie O’Rouke and his committee held the 20th Annual White Horse Beach Charity Golf Tournament.

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My Trip To Israel

I met Avi, Dikla, and Tamar Starr last year at the MSUD Symposium in Raleigh, NC. Tamar, classic MSUD, was 2 ½ at the time, and they invited me to come to Israel and stay with them for a year.

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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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A Child's Life

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