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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.

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

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NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

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Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

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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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Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

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From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

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MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

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The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

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19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

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Transform

A Child's Life

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