Affected by Congenital Muscular Dystrophy (CMD), Kelly Berger and Avery Roberts are joining forces to break stigmas and bring visibility to the rare disease community. Both rely on power wheelchairs due to their condition, but they refuse to let that limit their lives. On a mission to fight inaccessibility and exclusion, the two dedicate themselves to supporting other young adults with rare neuromuscular diseases by hosting biweekly webinars and advocating on Capitol Hill. With a clear purpose, they aim to inspire and empower those facing similar conditions, proving that despite the challenges, their voices and presence in the world are vital.
You live with Congenital Muscular Dystrophy, and even in the face of so many physical and social challenges, you haven’t allowed that to define your limits. How do you turn the surprise in people’s eyes on the streets into a tool for visibility and awareness?
Kelly: “I like to show people while out in public, instead of always telling or speaking, showing can be a powerful way to make an impact. So, being in public settings, navigating the world in my wheelchair with all the obstacles helps others see the struggles or the resilience I face just trying to get around a world not built for people with physical disabilities.”
Avery: “When it is evident that someone is not clear how to act and is surprised to see people like Kelly and me living our very full and active lives, we often use these opportunities as a moment for education. People often associate disability with isolation and pity, to name a few. But if you’re curious what Kelly and I live with, what our chairs do, we’d rather you inquire and comfortably connect with us rather than just continuing to live in a world where disability isn’t normalized.”
As you move — or better yet, roll — around New York City in your power wheelchairs, you’ve drawn attention and broken stereotypes. What kind of impact do you think this simple yet powerful presence in public spaces has on those around you?
Kelly: “Surprised or taken back. A wheelchair user, let alone two of them together at the same time, is like spotting a unicorn or a panda. It’s just not something you see every day. So, amongst all the wide-eyed or gaping mouths, seeing wheelchairs should be normalized as an everyday part of society. I hope we leave people feeling empowered that you can do anything regardless of your limitations.”
Avery: “It eliminates one of the many assumptions of the disability community that we don’t live very active and full lives. Its impact embodies the fact that disability and your differences don’t define you; you ultimately determine how it defines you.”
Even with the mobility limitations imposed by CMD, your lives are marked by movement, action, and engagement. How do you find ways to maintain an active and social routine in environments that are often not accessibility-friendly?
Kelly: “It’s a reallllllll struggle. I enjoy attending live music gigs and festivals, so most of my time is spent researching concert venues, accessible-seating tickets, venue accommodations, accessible parking options near the area, and weather apps to track if it makes sense to risk being out in too hot/cold/inclement weather with my power wheelchair. A lot of things that the average person wouldn’t have to take into consideration at all. It’s a ton of extra work, but I don’t let it stop me from pursuing a passion I dearly love. It just takes more to get to the end result, which makes me appreciate it that much more in the end.”
Avery: “To echo what Kelly said, there’s such an added layer that comes to doing something as simple as running a quick errand, most things people take for granted. It involves having to often check Google Street View to ensure that my destination is actually accessible and will accommodate my needs. Everybody’s definition of accessibility is different, especially when it comes to people who utilize manual vs. powerchairs. The powerchairs are way heavier, larger, and all in all need accessibility to a larger extent. Or sometimes there are places that will have a ramp to enter but no elevator inside. Every day, we encounter our society getting away with the bare minimum.
I’m a dancer in NYC, so authentic disability representation within the entertainment industry is something I personally advocate and work towards day in and day out, ensuring that the disability community feels seen and heard. And not only on stage or in front of the camera, but also offstage and in back of the camera. We need to start the long-overdue conversation on how we can make working in the entertainment industry less dehumanizing. How can we make dressing rooms and trailers more accessible? How can we ensure that an open call or audition venue is accessible? Are the bathrooms and rehearsal space accessible? The disability community is worthy and more than capable, talented, and skillful to see their story and their craft put against a narrative. I was the first wheelchair user to dance on the world-renowned Radio City Music Hall stage, and separately, among the first few wheelchair users to dance in a nationally televised live production — I should not have had to be ‘the first,’ but I certainly know I won’t be the last.”
Your work with Cure CMD shows how much you care about the rare disease community, offering genuine support. What inspires you the most when talking to others who live with the same condition?
Kelly: “It’s so neat to form those meaningful relationships that soon become lasting friendships with folks so similar to myself. It’s like finally finding a long-lost friend or family member. There’s this underlying bond and deep connection to have this shared commonality, it’s almost like an instant link that I get so much joy out of. I truly geek out over it and probably scare people with my excitement from those intertwined connections, it’s what I yearn for the most.”
Avery: “The ‘diagnostic odyssey,’ the rare disease community likes to call it, is often an experience of many filled with uncertainty, anxiety, and discouragement to say the least. It takes more than anyone would ever know, unless you have experienced it or know someone who has — it’s incredibly taxing physically, emotionally, mentally, and financially. And so to finally be able to connect with someone on a whole other level who can share experiences and do something as little as tell you ‘everything is going to be okay,’ is not only incredibly meaningful for us but for the newly-diagnosed person as well. To finally have the answers you’ve been searching for all this time and be able to connect with others traveling along the same journey is something Kelly and I for sure don’t take for granted. And to be able to have that source of comfort, knowledge, and insight is something Kelly and I so wish we had access to when we were first diagnosed, and so we’re so incredibly grateful to be able to be that outlet for others. This condition has led us to our bestest of friends who know we would do anything for each other, through thick and thin. We’re always there for each other through the good, the bad, and the ugly.”
In hosting your educational webinars, you not only inform but share real and heartfelt experiences. How do you choose the topics that will truly resonate with those on the other side of the screen?
Kelly: “We love to try to cover topics that are often ignored or not talked about often enough. We strive not to keep re-doing stuff that’s already out there, we prefer to get creative and really cater to the specific needs of our CMD community. Having topics that truly resonate with our audience and those ‘I wish we talked about this more’ moments is what motivates us to keep seeking those unique angles and resources or outlets that can help accommodate our community’s needs.”
Avery: “We try to bring topics forward that are often ignored but are at the forefront of the minds of those living with CMD, and really all neuromuscular diseases and physical disabilities. Often disability community members themselves, one of our main priorities is to bring on speakers who have personal, lived experiences that they can speak to and share their unique knowledge with our community around the world, but our community members also have the opportunity to tap into their insight as well. Especially since Kelly and I live with an ultra-rare form of CMD, Collagen 6, we’re able to bring that unique angle to the webinar series, while also adapting to community members’ various interests and perspectives, making sure we cover everything and anything that our community is longing for.”
You’ve mentioned the importance of bringing up conversations that are often silenced. What topics do you believe still urgently need to be discussed within the disability community?
Kelly: “It’s definitely a moving and changing time in this world currently, especially with certain policies in the U.S. I would like more attention on accessible transportation (vehicle, bus, train, air). One of the biggest hurdles for physically disabled people is access to getting out into the community.”
Avery: “To echo what Kelly mentioned, people often don’t realize how accessible air travel is crucial to the lives of those within the rare disease community. We should not only have the right to be able to see the world and travel, but also, since rare diseases are so rare, so to speak, there’s such a lack of clinicians who treat and are well-versed in our conditions. So to get the best, high-quality care that is needed for our health, well-being, and quality of life, we need to often travel around the world to see the best of the best. Some other topics that still urgently need to be brought to the table more are financial independence, access to healthcare and education, government health agencies’ funding, and marriage equality.”
The absence of treatments for over 90% of rare diseases can be discouraging to many, yet you choose to feed hope. How do you deal with this reality, and where do you find strength to keep believing in progress?
Kelly: “Finding those little glimmers of hope and celebrating the small wins. Any win for the rare disease community, whether it be by treatment or a legislative bill passed. A win for anyone in rare is a win for us all, because it can push us that little step further to streamlining treatments or access to care.”
Avery: “Hope. An encouraging support system. We’ve come a long way as a society, especially when it comes to ableism and where we were and where we are today, but we still have a way to go. We’re grateful to be here, to use our voices to enact positive, impactful change on behalf of our community, and to empower others to do the same. We want to start and be a part of these long-overdue conversations, ensuring that the disability community has a seat at the table.”
You’ve made it clear that you’re just getting started and that 2025 will be another year of advocacy and visibility for your cause. What do you hope to achieve — for yourselves and for the community — in the next stages of your advocacy journey?
Kelly: “To just keep finding new ways to support our community and broaden our network. Building those relationships and connections with change makers and policy leadership is always helpful when progressing forward for our cause.”
Avery: “We’ll be continuing our advocacy work, putting a face to rare disease on Capitol Hill. We’re grateful to have built relationships with our legislators and are looking forward to continuing to build and further those relationships to bridge the gap between rare disease and public policy so that the needs of our community are reflected in legislation. In all aspects of life, we will continue to break down barriers, start conversations, and eliminate misconceptions to ensure that the disability community and accessibility are not just a box checked. We’re excited to keep exploring disability and rare disease inclusion done right and what that means. We need to be met outside of the predefined box that society has put the disability community in.”
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