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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. At that time very little was known about the care of a child with MSUD, especially during times of illnesses. I clearly remember on one of our many hurried trips to Children’s Hospital in Philadelphia, Dr. Marc Yudcoff commented that maybe not in Mary K or my lifetime but surely in Keith’s lifetime there would be a cure for MSUD.

Now, almost 40 years later, I believe we are on the brink of seeing a cure for MSUD. The medical field is moving rapidly, with more frequent articles in the medical journals describing gene therapy and other therapies with the potential to correct different disorders. I believe a cure for MSUD is not far behind.

As a Board, we are concentrating our efforts and resources on raising funds which will allow us to sponsor research projects looking for better treatment and ultimately a cure. Let’s not lose hope but continue looking forward to the day when special diets will no longer be necessary. Just thinking about that is very exciting!

Along with fundraising, our aim to support research means we need more volunteer help. You will see more calls for volunteers to help out with these projects. A special thank you to Susan Needleman for agreeing to contact clinics and medical centers with the express purpose of looking for MSUD families who may not know about the MSUD Family Support Group.

Just a reminder: If you are planning to attend the symposium, don’t forget to register. I hope to see many of you there. It’s always good to reconnect with friends and create new acquaintances. I expect to hear much valuable information on a variety of potential therapies. See you in Pittsburgh on the 28th – 30th of June.



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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