Friends of the Institute came together on May 31 for a special fundraiser benefiting The Rocket Fund, a unique trust established at Sanford-Burnham dedicated to finding treatments for rare and neglected childhood diseases, such as congenital disorders of glycosylation (CDG).
CDG is actually a group of 50 or more rare diseases caused by inherited defects in glycosylation, the process cells use to coat cell proteins with sugar molecules.
Young patients have a broad spectrum of clinical problems often including developmental delay, serious intestinal and liver complications, clotting defects, eye, skin, and other serious issues.
Hudson Freeze, PhD, director of the Human Genetics Program at Sanford-Burnham, is a world-renowned expert in CDG. He and his lab seek to treat the disease, often working closely with the families of affected children.
One family Freeze has worked closely with is the Lickel family. Robert Lickel, a musician and father of two children affected by CDG, has become a close ally of Sanford-Burnham.
“We met Dr. Freeze through the CDG Family Network a few years back. He was very instrumental in confirming and typing my children’s diagnoses. His team is working incredibly hard to find treatment solutions, so anything we can do to help him and his researchers we’re happy to do.”
When the opportunity arose to host a fundraiser, Lickel partnered with local musician and philanthropist, Bob “Mugsy” Mulligan, to host the fundraiser at the Changing Times Pub in Farmingdale on Long Island, N.Y.
The event, called “Mugstock,” attracted more than 100 people and was a resounding success that rose vital funding for CDG research in Freeze’s lab.
“It was an emotional evening, for sure,” Lickel shared candidly. “We converged on the pub to have a blast and raise funds and awareness for CDG, The Rocket Fund, Sanford-Burnham, and Dr. Hudson Freeze. And that’s exactly what we did! We couldn’t have asked for a stronger, or more enthusiastic, turnout from our community.”
Freeze was equally warmed by the group’s fundraising efforts on behalf of his research. “Mugstock was a fantastic success that reflects how passionate Sanford-Burnham supporters really are. We are very grateful for their faith in the work we do.”