My name is Amy Jones. My husband Dean and I have a 6 year-old son, Derek. He was diagnosed with MSUD at 12 days old. We live in Barberton, Ohio. It's just a little town south of Cleveland and Akron. One of those cities where everyone knows everyone and their business. But we don't mind that. We love it here.

In 2005, we decided that we wanted to get a little more involved in searching for a cure for MSUD. We thought that if we held a fundraiser, maybe we would be able to raise some money to help with research projects that we had recently learned about that were going on. For our first annual MSUD Family Support Group Fundraiser, we had a Reverse Raffle at our local Moose Lodge here in town. We advertised in our local newspaper and hung flyers in grocery stores, our library, our relatives' places of employment and more. We had a slow start, but once the word got out about what we were doing and why, we quickly sold all of our tickets and had to turn people away. That year we were able to raise $4600! Pretty good for our first time!

Our second year, we were approached by a group of classic car collectors here in town, The Magic City Cruisers. They wanted to hold a benefit car show in Derek's name and have all of the proceeds go to the MSUD Family Support Group. We actually did this 2 years in a row. We raised a total of about $4,000.00 with these 2 events. Just this past year, October 2008, we thought that we would try yet one more type of fundraiser. We opted for a "Night at the Races". Wow, what a great time! Once again, we were sold out and raised around $4000.

It's amazing what people living in a small town are willing to do when it means helping to improve the quality of life for a child.

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

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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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NBS-MSUD Connect: Advancing MSUD Research And More


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

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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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A Child's Life

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