Anna, the mother of a little Russian girl with MSUD, with whom I had been in contact (see article by Anna, MSUD in Russia, in this issue), sent me an urgent request for help on March 31, 2002. She was deeply concerned about a one month old baby boy in St. Petersburg, Russia who had just been diagnosed with MSUD. Egor’s parents felt unable to take on the responsibility of a child who would require a lot of intensive and expensive care, and they were giving him up. The doctors were not well acquainted with MSUD, and Egor’s future looked bleak.

My heart was touched with the plight of this child. I wrote about the need for a home for Egor in the Vol. 21 No. 2 issue of the MSUD Newsletter and put a notice on the MSUD Family Support Group website. Irene Yusim, a friend of Anna’s in the United States, spent many hours communicating with adoption agencies and potential families. Several families showed interest in adopting Egor but eventually gave up. Families adopting from Russia are not allowed to meet the children until all the paperwork is done. This, along with the high cost of international adoption, Egor’s delayed development, and the need to learn how to care for a child with MSUD, discouraged families from adopting him.

After spending 6 months in a hospital, Egor lived in one of the best orphanages in Russia until the age of four. He was then transferred to a specialized facility for handicapped children. A Russian family in Finland, through a Christian charitable organization, purchased formula for Egor and delivered it to the orphanage.

Although Anna lived a long distance from Egor, she was very instrumental in his care. She supplied some of her own formula immediately after his diagnosis and sent the first supplements of isoleucine and valine. Throughout Egor’s life, Anna stayed in contact with his doctors providing them with information she had learned from her own research and from contacts with doctors and dietitians in other countries. These doctors highly respected her opinion. She eventually took a long train ride to visit Egor and took pictures of him to show potential adoptive families.

Egor passed away near the end of last year (2006). It is so sad that no family could be found to adopt him. As Anna wrote to me, "All the qualified care Egor received cannot substitute for the personal attention any child needs. In Russia, handicapped children do not get adopted. A lot of healthy children live in orphanages. Egor’s only chance was to find someone through the MSUD group." We failed to find a home for him, but his life was not in vain. Russian doctors in St. Petersburg now have more knowledge of MSUD which may benefit others in the future. May God bless Anna and Irene for all they are doing for the cause of MSUD in Russia.

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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