One of the goals of the MSUD Family Support Group is to increase our presence at meetings of metabolic clinicians. In April of this year, I had the opportunity to be an exhibitor at the Abbott Nutrition Metabolic Conference in San Diego, CA. The conference was held at the beautiful Loews Coronado Bay Resort and there were over 100 professionals, primarily metabolic dieticians, in attendance.

I provided literature about the support group to the attendees and encouraged them to inform their MSUD families about our organization, especially new families. A few professionals did not know that our organization existed and some did not know about our research projects or biennial symposiums. During the conference, I reconnected with the National PKU Alliance representative, Christine Brown, and was updated on the activities and projects of the PKU community.

The speakers and topics were interesting, however networking with the professionals was invaluable. Through networking, I learned many new things, including that MSUD is higher in the African American population and in those from El Salvador than I had realized. Hopefully our organization will be able to better connect with these families in the future.

The MSUD Board is committed to advocating for MSUD at professional meetings and plans to send a representative to one or more meetings each year.

Indigo Charlie Mays - Variant MSUD Age 4

Meet our girl Indigo Charlie Mays. After a smooth pregnancy and delivery, she was born on July 21st, 2013 in Seattle, WA.

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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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20th Annual White Horse Beach Charity Golf Tournament

On July 29, 2017 Charlie O’Rouke and his committee held the 20th Annual White Horse Beach Charity Golf Tournament.

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In the 2016 survey of the membership of the MSUD Family Support Group, research for improved treatments and potential cure was rated “most important” by 90% of the responding members.

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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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A Child's Life

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