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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..



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The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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