As MSUD families from Israel have attended past symposia, I have tried to get an Israeli physician to author an article for our newsletter. Along the way, I made a friend.

My family visited Israel this December. Prior to going, I contacted Dr. Hanna Mandel, at the Rambam Institute in Haifa. Dr. Mandel trained here in the US, and has been a leader in educating professionals and families about MSUD in Israel. I asked her if I would be able to contact her should Hannah become ill during our trip. She kindly gave me all of her contact information, including her cell phone number. Shortly before we left, I received an email from her asking if we would be able to meet. She said she would like to organize a meeting with a group of families. How could we say no? Dr. Mandel and her husband met us at a central location, and she drove us to a Druze village in northern Israel. We were unprepared for the hospitality that greeted us. We were welcomed into the home of a MSUD. One entire table was covered with homemade delicacies, and a second table was covered with low protein goodies. Six families convened from all over northern Israel to meet us. They all wanted to know how we treat MSUD in the US. Most of the children looked healthy and happy. One girl had been diagnosed late and had obvious physical impairments. None spoke more than a few words of English, but the kids all got along fabulously. In fact, 1 girl Hannah’s age invited her to sleep over! And she did! The mom told me the next day that it was a wonderful experience for her daughter, and I know it was for mine as well. Dr. Mandel works tirelessly to keep her patients healthy. She tries to get them to visit her monthly for blood tests. Often she travels to them. The dietitian who works with her uses the exchange system for dietary leucine. From what I saw of this group, they’re doing a great job.

Nada, Yuval, Hannah, Shada and Ramzi enjoy a feast of low protein food in Israel
Israel is more diverse than many think. In our group of 6 families, 3 were Druze, 2 were Arab, 1 was Christian, and 1 was Jewish. As we all know, MSUD unites us all. We are one family in our struggle against this disease.

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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A Child's Life

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