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You may have noticed that this Winter 15 issue of our newsletter is arriving later than usual this year. I was unexpectedly taken ill, and lost about a month of time. I feel fortunate to be almost back to normal and ready to get this issue rolling! Meanwhile, it’s the end of March and I’m still waiting for the first flowers to bloom. Instead, what do I see outside of my window??? Snowflakes! I take heart in knowing that by the time you are reading this the warm weather will be here.

My daughter Hannah (classic) is about to turn 21! How did this happen? This community has been a part of my life for 21 years, and I don’t know where I’d be without it.

I’m grateful to those who were willing to share their personal stories with us. For me, those pieces are the most gripping and meaningful. It gives us all the opportunity to learn how others are managing MSUD, where ever they live.

In this issue you will be introduced to our new Advocacy chairperson, Jordann Coleman, and also hear about the efforts of the Jones’ family and their success in raising funds to help meet the needs of our members. I hope these articles will inspire you to step up and participate in any way you can.

MSUD continues to be a focus of research. In this issue I review 3 papers published over the past few months. One tells us the status of MSUD in Brazil, another informs us of the results of an experiment with carnitine supplementation, and the third reviews the case of a successful liver transplant with mom as donor.

We no longer have a “Diet Wise” editor providing recipes using lo protein foods, but Dana Angelo White has provided a couple of recipes using healthful foods naturally low in protein and also shares with us information about her newly published cookbook. More recipes can be found online through the NBS Connect website: www.nbsconnect.org

Finally, we are grateful for the continued support we receive from Nutricia and Vitaflow.

All my best,

Karen Dolins
Mom to Hannah, Classic MSUD, age 20

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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