This month, you will see a new and distinctive logo featured on social media, T-shirts and maybe even some landmarks awash in green light. It’s all part of an effort to mark the first annual International Myotonic Dystrophy Awareness Day on September 15, 2021. This is a significant achievement for all of us who have been committed to raising awareness and accelerating development of therapies for myotonic dystrophy. Congratulations and well done to the Myotonic Dystrophy Foundation, Euro-DyMA, and to the many other organizations and community members who have brought this day to life.
International Myotonic Dystrophy Awareness Day will be the first global event specifically recognizing myotonic dystrophy, also known as DM. It’s a rare, complex and debilitating genetic disorder that can affect multiple systems and organs throughout the body, including the heart, lungs, GI tract and brain. As the disease progresses, it affects every aspect of life—from maintaining employment and accomplishing daily activities to taking care of children, having moments for self-care, and spending time with friends and family. Today, medicines can help manage some symptoms associated with DM, but there is no treatment that can significantly slow, stop or reverse disease progression. However, now more than ever before, there are a number of potential treatments in development.
Disease awareness days, like the new International Myotonic Dystrophy Awareness Day, create public visibility for and understanding of lesser-known diseases like DM, alleviate the isolation that living with DM often creates, expand the community of disease allies and highlight the debilitating and progressive symptom burden.
I had the life-changing privilege of serving as CEO of the Myotonic Dystrophy Foundation for eight years, a leading advocacy group for DM. During that time, we worked hard to elevate myotonic dystrophy within the muscle disease community and beyond, creating more sophisticated understanding with medical professionals, government agencies and the media of how myotonic dystrophy differs from other muscular dystrophies. We were motivated by the ongoing and significant public attention rare diseases such as ALS and Duchenne muscular dystrophy have achieved through sustained and well-orchestrated outreach campaigns (the Ice Bucket Challenge is a great example). These initiatives have driven care improvements, therapy development, and policy support, and have inspired ordinary citizens to donate or raise money for research. I continue to be committed to these efforts, now through our work at Dyne, to raise awareness and advance the development of potential treatment options — and as partners in the International Myotonic Dystrophy Awareness Day initiative.
Social media campaigns, awareness events and other activities planned for the first International Myotonic Dystrophy Day are a leap forward in this work—and are both symbolic and significant. They’ll remind affected families of the international scale and reach of the DM community. They’ll help educate physicians, policy makers and other key stakeholders of the impact of this disease and add urgency to the call for more investment in basic research, drug development and improved care.
So, let’s all get involved. We can educate ourselves and others on this disease. We can support DM community members sharing their stories on social media. We can remember that visibility and empathy are the best tools we have to continue on the road towards delivering life-transforming therapeutic options. Together, we will help build a better future for families living with myotonic dystrophy, and International Myotonic Dystrophy Awareness Day on September 15 is a good place to start.