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Galen Carrington is a 27 year old Indiana resident who has classic MSUD. He underwent liver transplantation 5 years ago at Children’s Hospital UPMC by Dr. Kyle Soltys as a treatment option for MSUD. Since surgery, Galen’s health has been excellent! He graduated from Wilmington College with a Bachelor’s degree in Psychology and is currently employed by the Carl Linder YMCA and Cincinnati Recreation Commission as a swim instructor and lifeguard. He has enjoyed swimming in 2 consecutive Transplant Games of America which were held in Houston and Cleveland-he brought home a total of 8 Gold Medals in all his events which included butterfly, breaststroke and freestyle!

This summer, Galen had the privilege of representing the USA at the World Transplant Games in Malaga, Spain! With over 30 countries in attendance and a strong competitor facing Great Britain, he managed to bring home 1 Gold and 4 Silver Medals! What’s more important than the medals is the global support for the success of transplantations and the need to increase awareness of organ donations.

Galen emphasizes how important it is to be a part of the MSUD Family Support Group as well as the Donate Life campaign in order to successfully manage his disorder and belong to a community of others who can relate to his condition. Galen continues to strive in his swimming career in honor of his donor family. Please look for him to represent Indiana in the next Transplant Games to be held in Salt Lake City, Utah August 2018!

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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