My name is Amanda Andraos; I am 19 years old and have MSUD (Maple Syrup Urine Disease). I was diagnosed at 9 days old by doctors at the University of North Carolina hospital, and have been closely monitored since then. My early years in school, weren’t very difficult; I would take my formula in a container and just add water and drink it with my lunch. As for the food, kids used to ask why. I would simply say its how God made me. Dealing with my diet as I got older became a lot easier, simply because I became more dependent on myself instead of on my parents. I would love to say that from my experience my parents were very helpful while I was younger and now that I’m depending on myself I have learned so much. I graduated high school in 2005, and then I went straight to college. I started out at a community college to get my electives out of the way and now I’m attending the University of North Carolina at Greensboro and plan to major in nutrition. I chose nutrition due to the fact that my nutritionist Dr. Diane Frazier has been a great help with keeping up with my records and helping me learn how to take care of my own dietary needs. She has been there for me when I needed her for a simple recipe or even to ask why I am limited to only a certain amount of protein a day. Her motivation and understanding has changed my view on life and I would love to help younger children that suffer from any metabolic issues to become independent like she helped me. Another dream of mine is to help younger children with MSUD or PKU understand that it’s not a disorder, it’s life. You are able to do what you want if you put your mind to it. I attended the metabolic camp last year and saw that some of the girls were down about having their disorders, but the counselors set the bar high and showed the girls it’s not a burden to life it’s a gift from God and we need to take it and make it our own. By making it our own I mean to make something of oneself. Be who you want to be.


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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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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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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Metformin As A Possible Therapeutic Agent In The Treatment Of MSUD

The MSUD Family Support Group has provided funds to Buck Institute for its preliminary studies investigating metformin

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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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A Child's Life

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