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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 www.msud-support.org.

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..



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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Advocacy

As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

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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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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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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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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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A Child's Life

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