In June 2009, I completed my first year of college at Ohio State University as a molecular genetics major. I lived on campus in a four-person freshman dorm room, about a half-hour drive from my current residence in Powell, Ohio.

I managed my diet with minimal parental support and monthly contact with my doctor and dietitian. That being said, I did not mix my formula myself, as there was not sufficient space in my small room. My parents came every three days to bring my drink and check my urine DNPH (a compound with a similar purpose as keto sticks).

I used OSU’s meal plan and the many restaurants that line nearby High Street to allow me to have plenty of food options making the issue of finding something to eat relatively non-existent. The food issue was also made easier because of my leucine tolerance of 1100 mgs per day. For those days that I ate food higher in protein, I kept a stockpile of candy and Gatorade to curb my appetite in the evening without increasing my protein intake.

Through all this, I experienced very few setbacks during autumn and spring quarter (a few minor leucine elevations here and there, but nothing major). However, during the winter quarter, my leucine became elevated numerous times requiring one trip to the ER and multiple trips home to consume more medical formula and low protein food under the watchful eyes of my parents. We didn’t determine the cause of the elevations, but my parents believe that stress was to blame. I am not convinced of that, however.

Next year, I will be living off-campus in a larger space and will purchase the meal plan that allows me to eat lunch on campus five times per week. In addition, I will be taking care of myself, including making my own formula, cooking some meals, checking my urine DNPH, and getting monthly blood draws. More than likely, my parents will be contacting me periodically to check up on me.

Overall, I found my first collegiate adventure to be painless in regards to MSUD. The amount of schoolwork I needed to do, however, was a different story.

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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A Child's Life

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