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As I finally sat down a few weeks after the symposium to review all the feedback I was just amazed at what an incredible and diverse group we have. Everyone had such wonderful things to say about the speakers and venue location, but most importantly the support in meeting the different families.

Here are come comments made by attendees of the 15th Bi Annual MSUD Symposium:

"The MSUD Symposium was a total breathe of fresh air. I have learned more than I thought feasible. Interacting with other families and the professional speakers was inspirational. Words cannot really explain how much I have learned and how much better I feel about Ruby's future." – Colin Kirwan, Australia

"I learned that in my lifetime I am going to live to see a cure or at least something that will enhance the quality of life. I have gained hope and inspiration."- Katie Foster

"I came here to learn about having children and the liver transplant. I learned so much and met so many new friends around my age. I am excited to learn more and to keep in touch. Thank you for all the information. It was a great Symposium!!" -Amanda Walton

"Wonderful Symposium! Thanks for all the dedicated work of the planning committee."

"Had a fantastic time for our first symposium. Very informative."- Sarita Garman

Suggestions for future symposium locations include Sydney, Australia, Honolulu ,Hawaii, Boston MA, Columbus OH, Raleigh NC, Lancaster PA, Ann Arbor MI, Atlanta GA, Salt Lake City, UT. And the winner of the 2012 MSUD Symposium is... Just kidding- you will have to wait until the spring newsletter to find out, but if you are interested in getting more involved please contact Barbara Mudrick at This email address is being protected from spambots. You need JavaScript enabled to view it. or Sandy Bulcher at This email address is being protected from spambots. You need JavaScript enabled to view it..

When I volunteered to organize this year's symposium, I knew that this was going to be different than putting on a work event, but I never expected to have such a rewarding feeling from doing something like this. When the board came to Chicago to view the Marriott almost 2 years ago there was some hesitation about my commitment to the group since we had decided to put Dylan on the liver transplant list. I assured them that MSUD is part of our lives and will always be. Dylan did have his transplant Aug 8, 2009 and I'm still here. I feel that no matter what a family's personal decision is that you should still support the MSUD community, whether financially or attending a symposium. I want Dylan and his brother Ethan to grow up understanding what an amazing group of people have this disease and to never take life for granted. I can't begin to say how proud I am to be involved with such a great group.



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 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

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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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