Genetic and Metabolic Dietitians International (GMDI), the professional group to which most of the dietitians you work with belong, holds conferences every other year.

This April I represented our group at their conference “Metabolic Nutrition in the 21st Century: Looking Towards the Future,” held in Scottsdale, Arizona. The purpose of my attendance was to exhibit and network; to teach dietitians about our support group, learn about advances in the field and network with representatives from other support groups.

As an exhibitor, I provided attendees with our brochure, research highlights, information about our group, and information about our upcoming symposium. Most were familiar with our group but weren’t aware of all we do. Others did not know about us and were happy to take information so they could refer families with MSUD to us for support. Dietitians expressed an interest in partnering with us for the development of educational materials in different languages, especially Spanish and Arabic.

In speaking with representatives of other support groups, I found that advocacy and fundraising were key focuses. While the PKU organization is unique in that they have a paid executive director, most rely on the dedication of volunteers as we do.

At this conference I learned of the Metabolic Diet App Suite, developed by dietitian Keiko Ueda and colleagues at British Columbia Children’s Hospital. Please read Keiko’s article in this newsletter describing the app, as I believe many of you will find it useful in dietary compliance.

In The Professional Journals

A Patient with MSUD: Acute Management with Sodium Phenylacetate/Sodium Benzoate and Sodium Phenylbutyrate

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I want to help out, but I don’t know how

Have you ever wanted to help out the MSUD Family Support Group but were unsure about how to contribute? The MSUD Family Support Group is actively looking for volunteers to assist with advocacy and fundraising efforts.

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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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From The Editor

Hello to my MSUD family! The power of this family hit home this summer, when Hannah (Classic MSUD age 23 years) and I visited Israel.

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Sweet Odyssey

Artur Santos was born on January 18, 2002, the second son of Soraya and Idario Santos. They never imagined how their lives were about change as the second baby arrived.

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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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