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 oft-forgotten rare disease community. CMD is a rare genetic disorder which causes the muscles to break down faster than they can repair or grow, which leaves Berger and Roberts to rely on wheelchairs as their main source of mobility and independence.

Berger resides in Ohio, while Roberts is just outside the New York City area. The duo got together recently in New York City, an uncommon occurrence considering the 600-mile (965 km) distance between the two. 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.

Kelly and Avery in New York City

"People are still so shocked to see people in wheelchairs existing in public, even in one of the biggest cities in the world," said Berger.

When they're rolling around the city side-by-side, the two make quite the statement. "People immediately redirected their eyes an don't know how to act normally when there's not only one, but two wheelchair users present," said Roberts. "It's fulfilling, shattering stereotypes and showing the public that we're relevant in todays 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 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 said.

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.

"We are committed to providing engaging and relevant topics that truly resonate with the rare disease community," said 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," said 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," said Roberts.

Two women using power wheelchairs

One of their favorite things is connecting directly with other community members on the same path. "It's extremely rewarding being able to make a positive impact helping other young adults gain confidence and support in their life transitions. I only wish I had a mentor or better roadmap to help me when I was younger to navigate the complexities of living with a rare disease," said Berger.

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," said Roberts.

They are both active participants in both state and federal rare disease efforts. They have engaged in Rare Across America and Rare Disease Week on Capitol Hill, sharing their stories with important policymakers hoping to enact change with their legislators for a more inclusive tomorrow. "Together we are one voice. The voice of the 30 million Americans impacted by rare disease. These powerful experiences, speaking with Members of Congress, are our moments of power," said Roberts.

They have both been acknowledged for their successful accomplishments. Roberts has been nominated in previous years for Rare Voice Awards hosted by Rare Disease Legislative Advocates (RDLA) being recognized for her constant dedication to supporting rare disease causes. Berger was awarded 2023 Ms. Wheelchair Ohio Ambassador, continually spreading positivity and empowerment.

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

Avery and Kelly looking at the New York City skyline

In their free time, they are wearers of many hats, both being avid travelers and foodies. Roberts is a dancer, being the first wheelchair user to dance on the great stage of the world-renowned Radio City Music Hall in New York City. Roberts was also among the first few wheelchair users to feature in a nationally televised live production when appearing as a dancer. Berger is a keen concert goer, attending music festivals and alternative gigs every chance she can get. She's often the only wheelchair user at shows and also seeks to improve live music accessibility for future generations.

About the Authors

Avery Roberts and Kelly Berger

Avery Roberts resides in New City, New York. She loves surrounding herself with family & friends and listening to country music in her spare time. Roberts enjoys exploring dynamic New York City and witnessing the light of the marquees, music from the stages of Broadway, and the bustling crowds of people all creating a simply terrific atmosphere.

Kelly Berger resides in Cincinnati, Ohio and loves traveling, having visited nearly 40 states. Berger loves new experiences and uses photography to capture her adventures in new cities, which usually involves trying epic amounts of food.

Both Roberts and Berger are big foodies, and their time together typically centers around multiple meal outings indulging in the latest food trends.

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Date: 9/12/2023 12:00:00 AM

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