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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!”

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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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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Advocacy

As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

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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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Galen Carrington Classic MSUD age 27

Galen Carrington is a 27 year old Indiana resident who has classic MSUD. He underwent liver transplantation 5 years ago at Children’s Hospital

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In The Professional Journals

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

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A Child's Life

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