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Here it is! Our one and only newsletter of 2016!



As you know, the Board decided to try producing an annual newsletter this year rather than a biannual one. This is in large part due to our ability to regularly communicate with the community through our website and 900+ member Facebook group. However, we do recognize that not everyone is connected electronically and feel that it is important to continue to produce a print newsletter at least once a year.

This year’s newsletter is full of information about our symposium which took place this June in Raleigh, North Carolina. It was wonderful to reconnect with everyone in our MSUD family and to meet new family members. Some of our speakers agreed to be video-taped, and you can hear their presentations in their entirety on our website at www.msud-support. org. Summaries are also available in this newsletter. In this issue you will also fi nd the results of our fi rst ever electronic member survey. Thanks to all of you who responded!

This past April I represented our support group at the Genetic and Metabolic Dietitians International Symposium (GMDI) in Scottsdale, Arizona and describe my experiences in this issue. While at the symposium, I met dietitian Keiko Ueda and learned of the new Metabolic Diet App Suite which she helped develop. I hope you’ll read the article she wrote describing this new tool and how it can help you manage the MSUD diet.

We were sorry to hear of the untimely death of Jennie Verbeek. Her parents beautifully describe her life and passions in this issue.

Amber Raye tells us of her accomplishments, and we are introduced to new Board members Herb Foster, Ed Fischler and Jennifer Saunders.

Some of you have asked for an expanded Diet Wise section. Unfortunately, our previous contributor has stepped down and no one has taken her place. Anyone interested? If you are, please contact me via email (see below).

Until the position is fi lled, please feel free to take a look at the Diet Wise section on our website where you will fi nd a link to NBS-Connect (https://nbs.patientcrossroads.org) and their library of low protein recipes.

Finally, on a personal note, our daughter Hannah (classic MSUD - 22 years old) continues to do well. If you were at the symposium, I’m sure you met her! She had a wonderful time socializing with all of you. Taking a break from her ongoing college studies, she had a great time this spring when our family visited Paris and Wales where her brother and sister were in school. Of course we made contact with local metabolic clinics before we left but fortunately we didn’t need to visit!

This newsletter is not the work of 1 person. Thanks to each of you who contributed, and a special thanks to Sandy Bulcher and Yossi Dworcan for their expert proofreading; and to Eddy Wang for his expertise in designing the layout producing the fi nished product. If you enjoy writing and would like to contribute to this newsletter or even help edit it, please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it..



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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