Search



This is a report on the MSUD formula crisis in Costa Rica which began in June, 2009. We were told there would be no more of the Mead Johnson BCAD formula until September. Some children with MSUD were running out of formula and the families shared the little they had left. Each can provided one more week of hope and well-being.

Because my foster son Dwight had died, I had extra formula on hand. [See the article “Our Visit With MSUD Families in Central America” by Joyce Brubacher in the Fall 2009 issue.] Following the doctor’s advice, I calculated the amount of formula I needed until the crisis was over for my foster daughter Karla who also has MSUD. I was able to provide 21 cans of the BCAD to share with other families. This was only a drop in the bucket in comparison to what was needed. During this time, there was only one child hospitalized. This was partly due to reflux, although he was also without MSUD formula.

I told Joyce Brubacher about our formula shortage. She put me in contact with Rick Finkel from Applied Nutrition to see if he would donate some Complex Essential formula. He shipped 32 cans free of charge with the shipping paid. The formula came in my name, and by a miracle from God, I was able to get it out of customs in one day. I was grateful for the help of the sympathetic officials who worked in the various offices, otherwise we would not have been able to get it out of customs for 30 days. At the end of that weary day, with the help of others, I delivered 16 of the cans to Dr. Saborío, our doctor at the clinic in San Jose. The other 16 cans we divided between the families most in need, giving 2 cans for each child with MSUD.

We parents are very grateful to Rick and Applied Nutrition for this lifesaving gift. The children really liked this formula. About 2 weeks later, we once again had formula available, MSUD Maxamaid from Nutricia. Finally, in February of this year, we were able to get BCAD again. Hopefully, the ones responsible for keeping formula in stock will plan ahead in the future because the crisis caused untold anguish and distress for the parents as all of you can imagine!



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.

Read More

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.

Read More

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.

Read More

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.

Read More

Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

Read More

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.

Read More

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.

Read More

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

Read More

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.

Read More

Transform

A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates