The Myotonic Dystrophy Foundation (MDF) is deeply saddened to learn of the passing of the iconic Gilbert Gottfried, who bravely fought the many complications brought on by myotonic dystrophy type 2 (DM2).
Mr. Gottfried's comedy brought joy to the world, and he is a great example of the resilient spirit of the DM community in the face of the often invisible difficulties that can accompany this disease. Many families impacted by DM embody that spirit and unite in hope as research accelerates toward treatments and a cure.
Our hearts go out to Mr. Gottfried’s loved ones during this difficult time.
About Myotonic Dystrophy
Myotonic dystrophy (DM) is a rare, genetic, inherited, multi-systemic neuromuscular disease for which there is no treatment and no cure. The most common form of adult muscular dystrophy and considered the most variable disease in medicine, DM can be an invisible and devastating disease affecting generations of families around the world. Click here to learn more about the basics of DM2.
As many as 1 in 2,100 people, or over 150,000 individuals in the United States alone, are affected by myotonic dystrophy or at risk of passing on the disease to the next generation. Myotonic dystrophy type 2 alone is even more rare, estimated to affect closer to 1 in 10,000 people. Through this inherited genetic anomaly, individuals with myotonic dystrophy experience varied and complex symptoms, including skeletal muscle problems, excessive daytime sleepiness, early cataracts and heart, breathing, digestive, hormonal, speech, swallowing, diabetic, immune, vision, and cognitive difficulties. Learn more about Myotonic Dystrophy at a glance.
Medical professionals are often unfamiliar with myotonic dystrophy type 2 (DM) because they see these cases so infrequently. That’s why MDF created informational toolkits and reference guides for clinicians treating people living with DM. We encourage anyone living with DM to download and share these resources with their doctors to help educate them about myotonic dystrophy care recommendations and improve the care the DM community receives.
For anyone who has recently received a myotonic dystrophy diagnosis, we recommend starting here!
Hope for the Future of Myotonic Dystrophy
The Myotonic Dystrophy Foundation is the leading global advocate helping patients and families navigate the DM disease process, and is often the first resource contacted by newly-diagnosed patients, their families, their social workers and their physicians around the world. MDF is actively funding researchers and research focused on both DM1 and DM2 and over 45 companies are racing to develop a drug.
The mission of the Myotonic Dystrophy Foundation is Community, Care, and a Cure
- We support and connect the myotonic dystrophy community.
- We provide resources and advocate for care.
- We accelerate research toward treatments and a cure.
Get Involved!
Learn more about myotonic dystrophy by visiting www.myotonic.org, join the Myotonic Dystrophy Family Registry, fund critical research, and help us change the future of this disease!
Help Raise Myotonic Dystrophy Awareness
Join our Global Alliance of over 50 international organizations and thousands of community members from around the world to raise myotonic dystrophy awareness on September the 15th!
- Share our DM Fact Sheet.
- Host a grassroots fundraiser.
- Post on your social media accounts using the DM Social Media Toolkit.
On August 4th, 2021 U.S. Senators Tim Kaine & Amy Klobuchar introduced congressional resolution S.Res.336 to declare September 15th International Myotonic Dystrophy Awareness Day with the aim of garnering the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy. Raising awareness of myotonic dystrophy will help improve service provision, basic research, drug development, and policymaking related to the disease. Increased funding for myotonic dystrophy research will improve health outcomes, reduce disability, and increase life expectancy for individuals living with the disease, and holds great promise for helping individuals with diseases with similar genetic bases, such as ALS, Fragile X syndrome, and Huntington’s disease.