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

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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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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Metformin As A Possible Therapeutic Agent In The Treatment Of MSUD

The MSUD Family Support Group has provided funds to Buck Institute for its preliminary studies investigating metformin

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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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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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A Child's Life

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