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On the last Sunday in October, Jeff complained of severe pain that ended up being a cecal volvulus, which is very rare. It is a serious medical issue involving the intestines where the cecum, the first portion of the large intestine, loops around itself and creates an obstruction. Ater 2 hours in the ocal emergency room trying to find a service to take him to Lancaster General, we had to drive him urselves (about a 2 hour drive) We were praying the whole time that we didn’t lose him before he could have life-saving surgery. The surgeon here and in Lancaster both agreed that Jeff had hours not days to get the operation. While we were driving him, I knew he was still alive because he was snoring. He had part of his ileum removed, plus the appendix and gallstones taken out and he battled pneumonia while in the hospital and at home. He now has a large scar up his belly. He has healed very nicely and s back to normal - working and volunteering. We are so thankful to Dr. Morton, Dr. Strauss, and Donna rom the Clinic for Special Children for their amazing medical work as well as the very dedicated nurses on the Pediatric floor at Lancaster General. It was funny to have Jeff, who turns 40 on Feb. 17 to be on that floor. He tried to take some of the nurses home. I know we tried our best but we just weren’t as pretty or as nice as the ones on the floor.


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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