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.

From The Editor

Hello to my MSUD family! The power of this family hit home this summer, when Hannah (Classic MSUD age 23 years) and I visited Israel.

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My Trip To Israel

I met Avi, Dikla, and Tamar Starr last year at the MSUD Symposium in Raleigh, NC. Tamar, classic MSUD, was 2 ½ at the time, and they invited me to come to Israel and stay with them for a year.

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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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From The Chairman’s Desk

On July the 21st the MSUD Board of Directors traveled to Bethesda, Maryland for our annual Board meeting. We stayed at the Hyatt Regency in Bethesda.

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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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As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

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A Child's Life

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