Genetic Alliance transforms health through genetics and its network includes more than 1,000 disease-specific advocacy organizations as well as thousands of universities, private companies, government agencies, and public policy organizations. The network is a dynamic and growing open space for shared resources, creative tools, and innovative programs. Through its work, Genetic Alliance brings together diverse stakeholders to create novel partnerships in advocacy, integrates individual, family, and community perspectives to improve health systems and revolutionizes access to information to enable translation of research into services and individualized decision-making.

On December 7 - 8, 2009 Genetic Alliance hosted the Newborn Screening Summit: Envisioning a Future for Newborn Screening in Bethesda, MD. More than 200 health professionals, family members, and others participated in the summit to discuss how long-standing state public health programs can evolve to keep up with new technology, societal and governmental trends, and medical advances. “This meeting provided a wonderful opportunity to visualize the newborn screening system from the point of view of many stakeholders. Working together we can provide the support the entire system needs,” said Sharon Terry, President and CEO of Genetic Alliance. The meeting was webcast live, and the videotaped proceedings as well as more information can be accessed at:

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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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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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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Our Story

On April 23 2015, our precious firstborn son Eliyahu Tuvia was born in Jacksonville, FL. All seemed well and we took our bundle of joy home.

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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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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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A Child's Life

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