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!”

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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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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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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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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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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A Child's Life

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