Search

My husband, Dave, and I decided to take a vacation to Costa Rica. Like Wayne and Joyce Brubacher, we like to meet MSUD families from other states or countries when we travel.  I was aware that the Abarca Mora family lived in San Jose, Costa Rica and contacted them about getting together during our trip. We had some difficulty communicating due to a language barrier, but with the help of a Spanish speaking friend we were eventually able to arrange a time and place to meet.

On the evening of our first day in San Jose, Randall Abarca Mora, his wife Johanna, and their 6 year old MSUD daughter Stacy, met us at our hotel. Dave and I were very excited to meet and spend time with them.  Randall’s friend was present to assist with translation. We spent most of our time talking about our children and their lives with MSUD. Randal and Johanna shared their struggles in obtaining medical formula and low protein food for Stacy.  They are considering forming a Costa Rican MSUD support group. Hopefully, as a group they will have more influence and be able to make changes that improve the lives of the MSUD children and adults in Costa Rica.

We have always found it very rewarding to meet new MSUD families when we travel. If your travel plans allow it, we would encourage you to consider it as well.


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