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Our organization joined 108 others in signing a letter in support of expanded newborn screening in Florida. While MSUD is now a part of newborn screening in every state, many other rare diseases are not. This effort, spearheaded by The EveryLife Foundation for Rare Diseases, aims to support legislation which would expanding newborn screening in the state of Florida to include diseases recommended by the state’s Genetics and Newborn Screening Advisory Council.



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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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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Advocacy

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

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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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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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