This week’s blog is from Kelly Berger and Avery Roberts, who both live with the rare condition, Congenital Muscular Dystrophy (CMD).
They raise awareness on rare inclusion and challenge the misconceptions around disability.
We are Kelly Berger and Avery Roberts, Congenital Muscular Dystrophy (CMD) affected individuals who hope to make our voices heard.
Together, we want to tackle misconceptions surrounding disability and give a loud voice to the, often-forgotten, rare disease community.
CMD is a rare genetic muscle disorder that causes muscles to break down faster than they can repair or grow, which leaves us as wheelchair users – relying on them as our main source of mobility and independence.
Recently, we got together in New York City, something that’s a rarity considering there’s a good 10-hour distance between us. Kelly resides in Ohio, and Avery is just outside the NYC area.
While together, it was pertinent that we shot some powerful photographs as we navigated the city in our power wheelchairs, illustrating that mobility doesn’t halt our existence in the outside world. People are still so shocked to see people in wheelchairs existing in public, even in one of the biggest cities in the world.
When we’re rolling around the city side-by-side, we make quite the statement. People immediately redirect their eyes and don’t know how to act normally when there are not only one but two wheelchair users present. It’s fulfilling, shattering stereotypes and showing the public that we’re relevant in today’s world, navigating a world that was not built for us.
Lack of accessibility isn’t a deterrent for either of us to be active participants in today’s society. Curbs, stairs, and/or other barriers aren’t stopping us from pursuing an active and social lifestyle. We are here, we are exhausted of being excluded and it’s our time to shine, no matter what obstacles we have to overcome.
When we aren’t turning heads with our power wheelchairs around the city, we support other young adults in the rare neuromuscular disease space.
Both of us work remotely as a part of the Community Outreach Team for the non-profit organization, Cure CMD. We host a bi-monthly virtual Zoom Webinar Series together providing educational content and offering a unique angle as we are both affected by the same CMD subtype, Collagen VI.
We are committed to providing engaging and relevant topics that truly resonate with the rare disease community. We support the community by highlighting areas that are often ignored but are at the forefront of the minds of those living with these conditions.
Collectively, our mission is to bring these discussions to life and really celebrate and uplift all those living with rare neuromuscular conditions. Offering them strength and advice in their journeys is something we’re both very passionate about.
We hope that creating these conversations around disability helps others feel less alone and to know their voice matters too, makes a positive impact and has power.
Today, more than 90% of rare diseases have no FDA-approved treatment or cure, including CMD. It’s the conversations surrounding rare diseases and advancing steps towards potential future progress that keep us hopeful.
Just talking about it and bringing light to these conditions is helping spark that drive…any forward progression in the neuromuscular field is a win for us all.
Thank you, Kelly and Avery for sharing your guest blog with us. We hope you enjoyed reading it!
If you’d like to write a guest blog for Beacon, find out more about sharing your story.
