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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. In the case of disease days, information about the disease may be posted on social media, along with other forms of communication, to spread awareness of it.

Soon you will hear about MSUD Awareness Day! I am working on having June 16th set as MSUD Awareness Day. This date was selected as it is the birthday of Cindy Blau, the first person with Classic MSUD known to the Maple Syrup Urine Disease Family Support Group to have survived.

For the past few months I have been working on the legal paperwork to make MSUD Awareness Day an official day. I am now working on getting two U.S. Senators, one from each party, to co-sponsor it. Once they agree to it, it will be official and hopefully by Jun 16, 2018, you will be hearing “Happy MSUD Awareness Day!”

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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Fundraising

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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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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MSUD Advocacy Update

Healthcare and issues facing the rare disease community have been at the forefront of national conversations over the past 6 months.

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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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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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Transform

A Child's Life

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