Two Affected with Congenital Muscular Dystrophy Strive for Rare Inclusion

 

Congenital muscular dystrophy (CMD) affected individuals, Kelly Berger and Avery Roberts 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.

source: Maddie Graves Photography

CMD is a rare genetic muscle disorder causing them to break down faster than they can repair or grow, which leaves Berger and Roberts 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’s few and far between considering there’s a good 10-hour distance between the two. Berger resides in Ohio, while Roberts 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 doesn’t 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 Berger.

source: Maddie Graves Photography

When they’re rolling around the city side-by-side, the two make quite the statement. “People immediately redirect their eyes and don’t know how to act normally when there’s not only one but two wheelchair users present,” says Roberts. “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 Berger or Roberts to be active participants in today’s society. Curbs, stairs, and/or other barriers aren’t stopping them 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,” Berger says.

When the friends aren’t turning heads with their power wheelchairs around the city, they support other young adults in the rare neuromuscular disease space. Both Berger and Roberts 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.

source: Maddie Graves Photography

“We are committed to providing engaging and relevant topics that truly resonate with the rare disease community,” says Berger. 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 Berger, “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 know their voice, too, matters, makes such a positive impact, and has power,” says Roberts.

Today, more than 90% of rare diseases have no FDA-approved treatment or cure, including CMD. It’s the conversations surrounding rare and advancing steps toward potential future progress that keep Berger and Roberts 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 Roberts.

The two are continuing their advocacy efforts and will be headed to Washington D.C. together in early 2024 to advocate for rare at Rare Disease Week on Capitol Hill on February 29.

source: Maddie Graves Photography

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