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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!

NBS-MSUD Connect: Advancing MSUD Research And More

NBSCONNECT.ORG

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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Fundraising

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.

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Cambrooke Foods Hosts Local Event

Cambrooke has been doing cooking demonstrations, social meet ups and educational events for patients, their families and the clinician’s that support them for many years.

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In The Professional Journals

A Patient with MSUD: Acute Management with Sodium Phenylacetate/Sodium Benzoate and Sodium Phenylbutyrate

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I want to help out, but I don’t know how

Have you ever wanted to help out the MSUD Family Support Group but were unsure about how to contribute? The MSUD Family Support Group is actively looking for volunteers to assist with advocacy and fundraising efforts.

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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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Transform

A Child's Life

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