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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.

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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Transform

A Child's Life

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