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Karen Dolins, EdD, RD, CDN
Mom to Hannah, Age 13

I hope you enjoy this issue of the newsletter. It is meant to provide updates in research and treatment, stories from member families, and practical information such as diet tips and new food products.

A new newsletter has its genesis as soon as the previous one is published. Requests are made to professionals and families alike for contributions. As everyone is busy, it takes quite awhile to gather enough information to publish. But the result makes it all worthwhile.

We are a family. I still remember the first newsletter I read after my daughter Hannah was diagnosed in 1994. It allowed me to feel connected to a group of people, to know that I was not alone, and that others would help me.

This issue features moving stories from members. The heartwarming story of the Burkholder family, with 12 children, 6 with MSUD puts into perspective the issues those of us face with 1 MSUD child. The magical story of Elan Geffen’s trip to Israel, and the humorous face that Jordan Bulcher puts on life with his disease will touch us all.

We have a peek into new research being conducted at Mt. Sinai Medical Center in New York, which meshes with a dietitian’s perspective on the importance of including fruits, vegetables, and a source of omega 3 fatty acids in the MSUD diet.

Meanwhile, please keep in mind that "it takes a village." You may have noticed that our website has not been kept up to date. You probably don’t realize that Sandy Bulcher practically single-handedly puts on our semiannual symposium, a feat that is usually accomplished by a dedicated committee of people. You will read the touching story of how several of our members have given of themselves, my daughter Hannah and Kay Larson in particular, to provide formula for families in the Philippines who otherwise would have gone without.

As you read through this issue of the newsletter, please don’t be a bystander. Be a participant. We need help with the symposium, with our website, and with a myriad of other tasks that are necessary to keep us a vibrant organization.

As winter turns to Spring, our children are growing up, mine included. Come December, we’ll be a family of teenagers as my twins turn 13. With growth comes independence. Our daughter Hannah (Classic MSUD - almost 14) is preparing to go away to camp for a full summer! She will be nearby so she can get to the hospital if necessary and my husband Jerry and I will be delivering her formula weekly and monitoring food logs, but it’s definitely a milestone for us. Since her siblings began going away to summer camp, she has longed to do the same.

Tell us about your families. Help us with our organizational needs. We inspire each other to reach beyond our perceived boundaries.

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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