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Congenital muscular dystrophy: Kelly and Avery’s mission to challenge perceptions of disability

Kelly Berger and Avery Roberts are both affected by congenital muscular dystrophy (CMD), a rare neuromuscular disease. Together they hope to spread positivity, showing others how their ultra-rare diagnosis doesn’t hinder their aspirations in life. They want to shatter stereotypes, start discussions about accessibility, and help to keep the conversations about treatments going

Kelly and Avery

Kelly and Avery face many day-to-day challenges and are reliant on others for assistance with activities of daily living. They both use power wheelchairs to help them maintain their mobility and independence and to lead active, social lifestyles.

Avery, a dancer, was the first wheelchair user to perform on the great stage of the world-renowned Radio City Musical Hall in New York City. She was also among the first few wheelchair users to feature in a nationally televised live production, where she appeared as a dancer.

Kelly has her own adapted mobility van that she drives independently with a joystick and computer system, and she is an avid traveller—she’s ventured to over 40 states and counting. She says that her love of driving and exploring fuels her desire to get others out on the road and feel that same “freeing sense of accomplishment”.

Recently the two got together in New York to shoot some powerful photographs as they navigated the city in their chairs. They wanted to illustrate the lack of accessibility in public spaces, created by kerbs, stairs and many other barriers.

They hope to translate the stares into change, through starting conversations about disability and public spaces. Avery says: “We just want to show others that we are relevant in today’s world, navigating a world that was clearly not built for us.”

“It’s always interesting to see people’s reactions to not only one wheelchair user in public but multiple!” – Kelly

Challenging disability stereotypes

“No matter what obstacles we have to overcome, we’re still going to find a way to be a part of things.” – Kelly

Even though the two share different interests, their common visions align when it comes to shedding light on the rare disease community. The pair sympathise with those newly diagnosed rare community members getting that genetic confirmation. Often, they’re not given accurate information, and their future outlook, living with a condition, can look bleak, faced with the stereotypes about disabled people that persist in society. “We hope to encourage others that disability doesn’t limit anything. It’s just a word. You ultimately define what it means and how you let it limit you,” says Kelly.

Both Kelly and Avery are also colleagues; they work together remotely as a part of the Community Outreach Team for the non-profit organisation, Cure CMD. Together, they host a bi-monthly virtual Zoom Webinar Series providing educational content and offering a unique angle both being affected by the same CMD subtype, collagen VI. The series aims to provide support to CMD and the disability community as a whole, covering a wide array of topics from mental health and adaptive equipment to the complexity of dating and relationships when you live with a physical disability.

The duo are also active participants in their individual state and federal rare disease efforts. They take part in Rare Across America and Rare Disease Week on Capitol Hill, where they share their stories with important policymakers hoping to enact legislative for a more inclusive tomorrow.

“We may just be one voice, but our voice is one of the 30 million Americans impacted by rare diseases. These little moments of power, speaking with members of Congress, is our time to shine.” – Avery.

They have both been acknowledged for their successful advocacy accomplishments. Avery has previously been nominated for the Rare Voice Awards hosted by Rare Disease Legislative Advocates (RDLA). Kelly still holds her reign as 2023 Ms Wheelchair Ohio Ambassador, a role in which she is continuing to spread positivity and empowerment to others.

Looking to the future

CMD is one of the more than 90% of rare diseases that have no FDA-approved treatment or cure. But Kelly and Avery are hopeful for the future. Avery says: “Just keeping the dialogue going and bringing light to these conditions is helping spark forward progress of the needle… any win in the neuromuscular field is a win for us all,” Avery says.

The two plan to continue their advocacy efforts and are headed to Washington D.C. together in early 2024 to advocate for rare at Rare Disease Week on Capitol Hill on 28 February.

Photo credits: Maddie Graves Photography

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