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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. As a result, the MSUD Family Support Group Board has adopted a goal to promote and support research that may result in better treatments and a cure for MSUD. Over the next two years, the board wants to accomplish the following:

  • Implement a patient registry for MSUD patients and increase enrollment in the patient registry to the majority of the family support group membership.
  • Promote use of the patient registry to MSUD researchers.
  • Facilitate new MSUD research projects.

For the past decade, Mr. Herb Foster and a few others have raised substantial donations providing some “seed money” to get this effort started. To sustain momentum and fund the registry and new research projects, we will need to take on the responsibility to raise additional funding. Later this year the board will initiate a number of fundraising activities to support the research objectives, which may include:

  • An annual fundraising appeal explaining current MSUD research, recent accomplishments, and a request for donations to continue the work.
  • One or more on-line or silent auctions of donations such as sports memorabilia, art, services, vacation packages, etc.
  • Other activities, such as “bowl-a-thons, walk-athons and other kinds of “thons”, golf tournaments, and participation in other fund-raising activities championed by MSUD families across the country.

To support these goals, we need as many of our members as possible to participate in these efforts! Over the next several weeks, we will be reaching out to you to communicate how you can volunteer and help to achieve these accomplishments. Expect to receive a call for volunteers in the near future!

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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