ROCHESTER, N.Y. (WROC) — The University of Rochester is leading the way in research for a rare muscular disorder called myotonic dystrophy.
The late, renowned comedian Gilbert Gottfried had myotonic dystrophy type 2 and took part in clinical studies with the University of Rochester over the course of his battle.
Gottfried, well-known for his contributions to the comedy world, died in the spring of 2022 due to complications from the disease. He was 67.
Most recently, a fund to benefit URMC’s research in Gottfried’s name was featured on Wednesday night’s episode of Celebrity Wheel of Fortune. More than $100,000 was earned toward the cause.
“It’s not something that you could really see, so it’s so easy to misdiagnose. It got worse as he got older because it’s progressive. Also, when you go on stage and you’re a performer, your adrenaline just kicks in and you go full force. He loved what he did so much that he just barreled through,” said Gottfried’s wife, Dara Gottfried.
The rare neurological condition has two types and both carry a wide range of symptoms, including the weakening of muscles over time. For many, like Gottfried, it won’t develop until later in life.
Before and after his death, Dara Gottfried has advocated to help find a cure.
Here at home, researchers with URMC are pioneering possible treatments for the disease. Dr. Chad Heatwole, who worked with Gottfried, leads the team at URMC’s Center for Health and Technology.
“We have a wide variety of research projects going on ranging anywhere from genetic testing to lab testing, the drug discovery process and clinical trial infrastructure, all the way up to novel genetic and symptomatic therapeutic trials. Our experience has really led the way and we’re very motivated to help this population,” said Dr. Heatwole.
URMC serves hundreds of patients with myotonic dystrophy at its clinics and has specialized in the care for nearly 50 years.
Gottfried says she hopes to raise awareness on the disorder, and continues to support the cause to fight it in her husband’s name.
“He would do things that would get him in trouble, but the truth is that he had the biggest heart and was the sweetest, sweetest person in the world. If I could use his name and legacy to help even one person, then what better honor is it than that?” said Gottfried.
Those interested in making a donation to URMC’s research efforts in Gilbert Gottfried’s name can visit their website.
News 8’s Adam Chodak sat down with Gottfried in Rochester in 2017. To watch the interview, click here.