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So much has happened since our last newsletter! Due to my geographical proximity and my RD status, I was asked to represent our group at the Genetic and Metabolic Dietitians International (GMDI) conference in Baltimore on April 15-17. I arrived with brochures describing our support group, and manned a table in the exhibit hall where I met many dietitians from all over the world. I was amazed and thrilled to hear that 5 were in attendance from Australia, 7 from Venezuela, and 2 from Poland! I'm sure I met dietitians who work with many of you. I know I met the Brubachers'!

When I wasn't in the exhibit hall, I attended sessions. I learned that an initiative is underway to develop nutrition guidelines for all of the Inborn Errors of Metabolism, including MSUD. Dianne M. Frazier, PhD, MPH, RD is spearheading this project, and describes it in her article on page 3.

I also learned practical guidelines for helping children with limited diets have a positive eating experience, and heard psychologist Susan Weisbran, PhD report on her work in the area of neuropsychology and Inborn Errors of Metabolism. It was incredibly reassuring to know that so many capable people are working so hard to help affected individuals live up to their potential. Special thanks to Applied Nutrition Corp. for helping to fund my trip. More recently, Hannah (classic 16 years), Jerry and I attended Symposium 2010 in Libertyville, Illinois. The symposium never disappoints. We met many new families, shared advice, and were motivated to continue our advocacy efforts. Hannah and I decided it was time to take part in a fundraising effort. Barbara Mudrick has agreed to lend us her expertise, we've rounded up extended family members, and we're planning an event in the Chicago area. We hope to raise money for research efforts as well as practical help for MSUD families in need.

This issue is packed with information on the symposium for those of you who were unable to attend. We also have an article on genetic counseling and two on MSUD and pregnancy, one written from the perspective of a mom and the other by dietitian Sandy van Calcar, who teaches us what she has learned helping individuals with MSUD experience safe pregnancies (see page 14). Glenda Groff continues to provide us with recipes to tempt the appetite, and Joyce Brubacher tells us about her experiences in Costa Rica. Anyone can write for the MSUD newsletter. We all have a story to tell. Writing expertise isn't required, just your willingness to help others through your words and wisdom. Start today by writing down your thoughts, and I'll help you turn it into an article for the next issue.

In health,
Karen Dolins

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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