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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..



Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

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NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

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Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

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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.

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Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

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From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

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MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

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The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

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19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

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Transform

A Child's Life

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