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A little over a year ago, in January, Jeff was just not himself. He had limited energy, was not eating well, and often appeared slightly agitated. We thought that it was SAD (seasonal affected disorder) so we got out the light bar and made sure he put all the lights on when in a room. But this was not the cause. His condition got worse so we took him to see Dr. Morton, even though Jeff yelled at us for” kidnapping” him from his job at McDonald’s. His blood leucine levels were slightly elevated and the ratio of isoleucine and valine was not normal. Also his tryptophan levels were very low. This enzyme helps regulate mood. We increased his Zoloft, gave him Melatonin, and 5-hydroxytryptophan (for a brief period). He also went on a sick day regime. Dr. Morton helped us understand that because Jeff is 41, his metabolism has slowed and he needs less protein. Jeff has a variant form of MSUD so he has always been able to handle more daily natural protein. We had to look at his diet and start limiting some of his snacks, many of which had 1 gm of protein. The 2 toughest changes were French fries and orange juice. A small serving of McDonald’s French fries has 3 gm of protein so he now has 2 hash browns at lunch plus a salad. Orange juice is high also so he now drinks an orange/pineapple drink. We have been using some gluten free products. After these changes, we had his blood levels checked and his leucine level was within normal range, much lower than it used to be. Jeff is back to the fun guy he has always been. He sleeps better due to the melatonin. We hope that when he is in his 50’s this will not start again. We also hope, as do all of the MSUD patients, that there will be a cure by then or at least a drug that allows them to consume more daily natural protein.

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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