Pen Pals

Any kids out there interested in talking with other MSUD kids?
A new on-line group has been formed.

Sign on, introduce yourself, compare experiences, and talk about whatever is on your mind.

The address is: This email address is being protected from spambots. You need JavaScript enabled to view it..
When my son Marlon was born four years ago and diagnosed with MSUD, I felt alone. He was the only person in the state of Alaska diagnosed with this metabolic disease. I was recommended to join the MSUD support group, and thanks to this group I learned very valuable information about this disease from the parents and guardians of children suffering from MSUD. I cannot imagine our lives in these last four years without the support of all of the wonderful families that participate in this group. They became our second family.

Later on messages were posted in this group. There were families from Spanish speaking countries that were hoping to find some support and help. The language was in many cases an impediment. Being born and raised in Spain, I felt for those in my country and other parts of the Spanish speaking world who had no way to communicate with other families that were living with MSUD. One day I thought I could form a Spanish MSUD chat group. The MSUD support group agreed to post my name and information on their website. I now receive phone calls and e-messages from countries such as Spain, Mexico, Honduras, Argentina, Peru and Chile. Some of these families are very desperate to obtain some help, and others just seek to meet someone that would share their situation. I feel great joy whenever I can help these families to connect with those of us living similar situations. Several families from Spain and South America have now joined.

If you would like to join the Spanish MSUD chat group, please send an e-mail to the following address: This email address is being protected from spambots. You need JavaScript enabled to view it.

Grupo de charla sobre MSUD en español

Cuando mi hijo Marlon nació hace cuatro años y le diagnosticaron con MSUD me sentí muy sola. El era el único en todo el estado de Alaska diagnosticado con esta enfermedad metabólica. Me recomendaron unirme al grupo de apoyo de MSUD, y gracias a éste, logré información increíblemente valiosa sobre esta enfermedad, la cual venía directamente de padres de niños y adolescentes que sufrían la misma enfermedad. No puedo ni siquiera imaginarme nuestra vida en estos últimos cuatro años sin el apoyo de todas las maravillosas familias que participan en este grupo. Llegaron a ser nuestra segunda familia.

Al cabo de algún tiempo llegaron mensajes al grupo. Estos venían de familias de países hispanohablantes que tenían la esperanza de encontrar apoyo y ayuda. Frecuentemente el idioma se convertía en un impedimento. Al haber nacido y sido criada en España, me consternaba el saber que había familias con necesidad de apoyo en mi lugar de origen y otros países, quienes no tenían forma de comunicarse con otras familias que estuviesen viviendo con MSUD. Fue entonces cuando se me ocurrió la idea de formar un grupo de charla sobre MSUD en español. El grupo de apoyo de MSUD en los Estados Unidos aceptó a anunciar mi nombre e información en su página web. Hoy en día recibo llamadas telefónicas y mensajes electrónicos de países como España, México, Honduras, Argentina, Perú , Chile, etc. Algunas de estas familias se encontraban en situaciones desesperadas para obtener algún tipo de ayuda relativa a esta enfermedad. Otras, sin embargo sólo deseaban conocer a alguien más viviendo su misma situación. Varias familias de España, México y América del Sur, forman ahora el grupo de charla sobre MSUD en español.

Si desea unirse al grupo de charla sobre MSUD en español, por favor envíe un e-mail a la siguiente dirección:
This email address is being protected from spambots. You need JavaScript enabled to view it.

Mónica Falconer
Anchorage, Alaska

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


A Child's Life

Subscribe to our mailing list

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