Friends and family gathered at the Dana Hotel and Spa in downtown Chicago on Saturday evening March 12th. The mood was festive, enhanced by the Roxx Box Band and food provided by Gene Kornota and Tony Klok of the Dana Hotel. Aided by a major donation by Dr. Lisa Ring, we cleared almost $12,000 after expenses. Vitaflo and Cambrooke Foods also sponsored the event.

It was great to see MSUD families old and new along with friends and family who came to support our children. Hannah Dolins (17 classic) and Mackenzie O’Brien (13 classic) helped MC the raffle and silent auction.

Many thanks to Barbara Mudrick (mom of Dylan 3 years old, 2 years post-transplant) and my sister-in-law Karen Dolins (yes, we have the same name) who worked tirelessly to bring in donations and raffle items along with planning the event.

I was thrilled to have successfully bid on a quilt handmade by Wayne Brubacher’s mother for her grandson, Joyce and Wayne’s son Monte. Monte was a MSUD pioneer, the first in the world to be identified with MSUD through a state newborn screening test 12 days after his birth in 1965. Sadly, Monte died at the age of 9 from cerebral edema. Had he lived, he would have been 46 years old on March 12th, the day of our fundraiser. What was learned from his short stay on earth has helped improve the treatment of others with this disorder. Joyce and Wayne donated the quilt in the hope that the money raised will go towards research to help further improve treatment for the many facing the challenges of living with MSUD today.

Putting on the fundraiser was, I can’t lie, a lot of work. The payback, though, was enormous and we got back much more than we put in. We are gratified to know that our work is helping to sponsor research into MSUD. We urge any of you who are considering putting together a fundraiser to take the plunge. You’ll find it gratifying as well, as family and friends come together to help support our cause.

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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