Hi everyone, we are the Widezki Family from Israel and we are proud to introduce you all to our daughter Noy who celebrated her BAT MITZVA on February 13, 2015.

All of you know that children’s birth is an exciting event.

All children land on their parents happily even if those moments involved concerns and excitement. But Noy came with a big drama, and we were young parents, without realizing that we would be forced to make difficult decisions.

Noy born on February 9th, 2003 and was diagnosed as MSUD classic in 14 days.

After 4 days in PICU we were told that Noy has MSUD and she must have Hemo-Dialysis as all her body was already toxic with leucine levels of 2,340mg!!!!

Today, we all know that we have chosen this gamble right for us and for Noy.

We chose to raise this special girl, as a normal child, of course with food restrictions however we never prevented her from experiencing flavors. I remember strongly when we participated in our first symposium in Atlanta 2004 and we asked some families “tell us what is the daily menu of your children?”, Most of them answered: “Potato chips and all forms of potatos”.

Without press and cameras we ran this marathon race without breaks, and some falls when we went to the hospital, but we always get up and keep running. Noy has grown to be a girl called wise and determined that nothing stands in her way. She knew from a young age always to get up and to move on.

Life is not easy for her but absolutely possible.

Our mission to all of the MSUD families is to show that MSUD can be managed.

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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