Communication sure has changed over the past couple of decades. Does anyone still write letters? My handwriting has gotten so bad that I struggle over short thank-you notes!

When I first joined this support group after the birth of my daughter Hannah (Classic, 21 years), I was thrilled to get this newsletter in the mail. I certainly didn’t know anyone else with this rare disease, and I enjoyed the connection I felt with others for whom MSUD was a part of their reality. Now I enjoy reading posts on the Facebook page, although I must admit I’m not a regular user. I also get MSUD news through email, either from advocacy organizations or subscriptions to scientific articles. And of course we have our website managed by Eddy Wang at

When our board met in June (see President’s note by Ivan Martin), effective communication was high on our agenda. We discussed the fact that many organizations are reducing the number of print newsletters they produce, with some opting to do away with them altogether. We now have more efficient ways of delivering the news. Rather than delaying communication for months while we gather information, go through the editing process, publish, address, and mail the print newsletter, we can post items of interest on our website, on our Facebook page, or send an eblast. This does 2 things for us: it gets important information to you faster, and it saves our organization money which we can then use for other purposes.

We have decided to take a middle of the road approach. We will continue to print 1 newsletter annually, and communicate throughout the year through our website, FB page, and occasional eblasts. This means you will hear from us more often! It also means that you have an easy way to let us know what you’re thinking, feeling, and how we can help. We do hope that our international members will agree to receive our newsletter electronically. Please let us know.

This issue includes family stories – thank you to the Bricker family and the Vaidya family for sharing. We also provide updates on research that has recently been published in the professional journals, recipes from Dana White, and of course information on our upcoming 2016 Symposium.

Please feel free to get in touch as often as you’d like. You can reach me at This email address is being protected from spambots. You need JavaScript enabled to view it..

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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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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Cambrooke Foods Hosts Local Event

Cambrooke has been doing cooking demonstrations, social meet ups and educational events for patients, their families and the clinician’s that support them for many years.

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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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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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A Child's Life

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