Muscle Memories — a RAREly Told Stories Film on OPMD

In February of 2024 Global Genes together with The Disorder Channel presented a workshop, RAREly Told Stories, on how to tell your rare disease story in video. We were so pleased with all the excellent short documentaries that resulted from this session. Three of the films will be screening at our RARE Advocacy Summit in Kansas City this September. Here’s a look at the film “Muscle Memories: Exercising a Powerfully Rare Mindset ” by Maureen Costello on Oculopharyngeal Muscular Dystrophy (OPMD)

“I firmly believe that everyone affected by a rare disease should not only have a voice but also access to all the resources they need to impact their health and well-being. I learned in the RAREly Told Stories Workshop that to be a true advocate for myself and others, that amplifying my own story is an important step to improve access to quality care. That means coming out of hiding and speaking about my rare disease. While making a film took something, it was the best way I could imagine showing others what it means to not only talk the talk but to walk the walk.

Title image for the film Muscle Memories: Exercising a Powerfully Rare Mindset

I believe that listening and expressing are the foundations of effective advocacy, and I am committed to doing both. I’ve heard the struggles of people in my rare disease community. They are unsure about what to do next, how to act, and they are curious about what others with an adult-onset rare disease diagnosis experience. I want them to know they are not alone and to understand my journey as it might inspire something in their own journey. My journey has been one in continuous growth and evolution in my health, presence, communication, and empathy. That’s why I made this film—to share what I have learned and to inspire others that they are not alone and that there is a path for them.

For me, being in action is about valuing my voice while also reducing its significance (it is only one of many), igniting genuine conversations, and fostering curiosity. My journey has taught me not to give up when things get tough. I believe that being present, truly hearing others, actively listening, and voicing the concerns and needs of those who need to be heard are essential. I believe that together, we can create a more inclusive and supportive community for individuals living with Oculopharyngeal Muscular Dystrophy which is only now starting to get a voice, AND, more and to ensure our voices are heard in the rare disease space. Participating in the RAREly Told Stories Workshop and making this film moved me. I now feel one with the rare disease community, but that OPMD is one as well. And that anyone’s voice can make THE difference.

A scene from the film Muscle Memories: Exercising a Powerfully Rare Mindset

I believe everyone affected by a rare disease should not only have a voice but also access to the resources they need to impact their health and well-being. The RAREly Told Stories Workshop taught me that amplifying my own story is a crucial step to improving access to quality care. Making a film was my way of showing others what it means to not only talk the talk but walk the walk. Listening and expressing are the foundations of effective advocacy, and I am committed to doing both. Together, we can create a more inclusive and supportive community for those living with Oculopharyngeal Muscular Dystrophy and ensure our voices are heard. Participating in this workshop and making this film moved me deeply. I now feel one with the rare disease community and believe that anyone’s voice can make a difference.”

– Maureen Costello