Search

My name is Bernardo Villela, I am twenty-four years old and I have Classic MSD. My daily routine is rather simple. I have my formula three times a day: breakfast, lunch and dinner. I watch my protein intake never consuming more than twelve grams per day. MSD is not something I think of that much because I don’t feel it really impedes me. I haven’t really felt that MSD has complicated my life since I was very young. I haven’t been hospitalized in eleven years, and the last time was due in part to the fact that I had chicken pox. The way I look at it, and what I usually tell people, is that I have a special diet because that’s all it feels like most of the time.

I recently graduated from C.W. Post- Long Island University with a BFA in Film. During my two years there I was on the honor roll three out of four semesters and made the Deans List in my senior year. I had previously attended Fairleigh Dickinson University- Madison for four years where I became well versed in film theory and screenwriting before transferring to C.W. Post to focus on the production aspects of film.

This summer I wrote and directed Suffer the Little Children a non-commercial, non-exclusive adaptation of the Stephen King short story by the same name. I acquired the rights over a year ago and lead the film from casting all the way through to the final edit. The film will be going on the festival circuit in 2006 (www.sufferproductions.com). I am currently employed at Stonestreet Studios in New York, as a director, editor and instructor. Stonestreet is a conservatory which teaches film acting to theater students and works in conjunction with New York University - Tisch School of the Performing Arts.

The older I’ve gotten the less I’ve thought about MSD. Sometimes I go for days without even thinking about the fact that I have it. I take good care of myself and am very aware of what I need to do to keep my levels down. All in all I haven’t let MSD get in the way of what I want to accomplish. I’ve set goals for myself and I’m determined to achieve them.

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