The story of Avery & Kelly
Congenital Muscular Dystrophy (CMD) affected individuals, Kelly and Avery are making their voices heard. Together they hope to tackle misconceptions surrounding disability and give a loud voice to the, often forgotten, rare disease community.
CMD is a rare genetic muscle disorder causing them to break down faster than they can repair or grow, which leaves Kelly and Avery as wheelchair users relying on them as their main source of mobility and independence.
Recently, the duo got together in New York City, something that is few and far between considering there is a good 10-hour distance between the two. Kelly resides in Ohio, while
Avery is just outside the NYC area.
While together, it was pertinent that they shot some powerful photographs as they navigated the city in their power wheelchairs, illustrating that mobility does not halt their 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,” says Kelly.
When they are rolling around the city side-by-side, the two make quite the statement. “People immediately redirect their eyes and do not know how to act normally when there is not only one but two wheelchair users present,” says Avery. “It is fulfilling, shattering stereotypes and showing the public that we are relevant in today’s world, navigating a world that was not built for us.”
Lack of accessibility is not a deterrent for either Kelly or Avery to be active participants in today’s society. Curbs, stairs, and/or other barriers are not stopping them from pursuing an active and social lifestyle. “We are here, we are exhausted of being excluded and it is our time to shine, no matter what obstacles we have to overcome,” Kelly says.
When the friends are not turning heads with their power wheelchairs around the city, they support other young adults in the rare neuromuscular disease space. Both Kelly and Avery work remotely as a part of the Community Outreach Team for the non-profit organization, Cure CMD. They host a bi-monthly virtual Zoom Webinar Series together
providing educational content and offering a unique angle as they 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,” says Kelly. According to her, supporting the community by highlighting areas that are often ignored but are at the forefront of the minds of those living with these
conditions is a main priority of theirs.
“Avery and I feel it is our mission to bring these discussions to life and really celebrate and uplift all those living with rare neuromuscular conditions,” says Kelly, “Offering them strength and advice in their journeys is something we are both very passionate about.”
“We hope that creating these conversations around disability helps others feel less alone and know their voice, too, matters, makes such a positive impact, and has power,” says Avery.
Today, more than 90% of rare diseases have no FDA-approved treatment or cure, including CMD. It is the conversations surrounding rare and advancing steps toward potential future progress that keep Kelly and Avery 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,” says Avery.
The two are continuing their advocacy efforts and are headed to Washington D.C. together in honor of Rare Disease Week to advocate for rare on Capitol Hill this Rare Disease Day, February 29.