Search


As I reflect on the Symposium from this past June in Raleigh, North Carolina, I feel the time and eff ort needed to go was well worth it.

The subjects presented were very informative and gave those of us whose lives revolve around MSUD new hope and strength to continue striving for better clinical care and ultimately a cure for MSUD. I believe we are on the verge of some very exciting discoveries in the medical fi eld including gene therapy.

Thanks to the United Services Foundation, we were again able to assist ten families from all over the world with travel expenses to attend the symposium. Some of the families traveling from foreign countries have very poor clinical care facilities;for those families, the Symposium is a very informative and a much needed educational opportunity for them.

The MSUD Board of Directors has reorganized by accepting the resignation of two of its long time members and has added three new members. Thank you Amy Jones and Anne Fredericks for your years of service. We welcome Jennifer Saunders, Edward Fishler and Herbert Foster as our new board members.

During the symposium, Herb Foster presented a giant check to the MSUD Family Support Group from the Scott Foster Foundation. These funds are earmarked specifi cally for medical research. Our hope is that through this generous contribution, we can move closer to our goal of fi nding a cure for MSUD.

Thank you again to all those who were able to attend the symposium.





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.

Read More

Advocacy

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

Read More

NBS-MSUD Connect: Advancing MSUD Research And More

NBSCONNECT.ORG

Rare disease registries have received attention in recent years because of the many ways in which they can benefit the rare disease community.

Read More

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.

Read More

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.

Read More

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.

Read More

Transform

A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates