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Gilbert Gottfried Myotonic Dystrophy Type 2 Research Fund

Gilbert Gottfried, his wife, and two children family portrait

In memory of Gilbert Gottfried

My father, comedian and actor Gilbert Gottfried, passed away on April 12, 2022 from complications of a rare genetic disease, Myotonic Dystrophy Type 2 (DM2).
There is currently no cure or treatment, but the University of Rochester’s Department of Neurology is leading the way to finding one.

Although just discovered within the past 20 years at The U of Rochester, DM2 is the most common form of adult-onset muscular dystrophy. Unfortunately, most people, including MANY doctors, have never heard of it! My father was undiagnosed for YEARS!
The money raised in my father’s honor will go directly to research specifically for DM2 NOW!

The U of Rochester is exploring innovative and promising treatments for DM2. Immediately, the monies raised would go towards expediting the discovery, testing, and development of beneficial and life-altering therapeutics for patients with DM2.

Please join me in being part of the best way I know how to honor my dad’s life – by helping other people live a happy and healthy one.

With love,
Lily Gottfried

What is Myotonic Dystrophy Type 2?

Myotonic dystrophy is a genetic, neurological disease with a wide range of symptoms ranging from fatigue, muscle stiffness, muscle weakness, cognitive impairment, depression, difficulty sleeping, impaired vision, pain, difficulty swallowing, and cardiac problems. The severity and onset of these symptoms vary from patient to patient. Myotonic dystrophy type 2 (DM2) shares many similar clinical features with the more common myotonic dystrophy type 1 (DM1), but is often under-recognized and can be misdiagnosed. It can be difficult to differentiate from DM1 and many clinicians, including neurologists, are not familiar with the disease. Despite troubling symptoms, patients often remain undiagnosed for years or even decades.

Why the University of Rochester Medical Center?

URMC has been a leader in research and care for myotonic dystrophy for nearly 50 years. Our neuromuscular researchers were the first to identify DM2 in 1995. Since then, our team has been instrumental in creating the global research networks, partnerships with the patient community, pipeline of trained clinical researchers, and research tools necessary to study the disease and advance new treatments.

Decades of research are helping to build a detailed picture of how these diseases progress over time. In addition, close collaboration with patients and families has enabled us to pinpoint the symptoms that are most important to patients. Our team is leading the way in the development of new treatments for myotonic dystrophy, including a new wave of genetic therapies that are already transforming care for other neuromuscular disorders.

The Gilbert Gottfried Myotonic Dystrophy Type 2 Research Fund

The Gilbert Gottfried Myotonic Dystrophy Type 2 Research Fund will provide current use support for research, with a preference for myotonic dystrophy type 2 research, such as the work conducted by Dr. Chad Heatwole.