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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!”

In The Professional Journals

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

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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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My Trip To Israel

I met Avi, Dikla, and Tamar Starr last year at the MSUD Symposium in Raleigh, NC. Tamar, classic MSUD, was 2 ½ at the time, and they invited me to come to Israel and stay with them for a year.

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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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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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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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Transform

A Child's Life

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