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Global Genes®, a Rare Disease advocacy organization, has created an alliance of rare disease organizations to harness the power of collective impact. This alliance aims to provide patient organizations with an avenue for sharing best practices and lessons learned to drive better outcomes for the entire rare disease community. The MSUD Family Support Group has joined this alliance, giving us the opportunity to become stronger in a variety of areas including:
  • Marketing
  • Research
  • Networking
  • Public Policy
  • Family & Patient Support
  • Education
  • Resources
An immediate benefit of our membership in this organization is the ability to raise money for the MSUD Family Support Group. Global Genes® is hosting their 3rd Annual “Denim Dash” Virtual 5K. This virtual race occurs throughout the month of April and encourages rare disease supporters to run/walk/bike a 5k to raise money to support the rare disease community. New this year is the 50/50 split of net proceeds between Global Genes and Foundation Alliance Members. The MSUD Family Support Group has created a team and we encourage you to join! Help us spread awareness and raise money. Visit www.crowdrise.com/msud-road-warriors

With the support of the Global Genes® and the RARE Foundation Alliance, the MSUD Family Support Group looks forward to growing our impact and reach to ultimately improve the lives of people living with MSUD and their families. For more information about this organization, visit their website at www.globalgenes.org

In The Professional Journals

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

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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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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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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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Transform

A Child's Life

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