Avery Roberts & Kelly Berger - Striving for Rare Inclusion

Congenital Muscular Dystrophy (CMD) affected individuals, Kelly Berger and Avery Roberts are making their voices heard as they speak with Katie Corbett and Mandeep Ladhar. 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 Berger and Roberts as wheelchair users relying on them as their main source of mobility and independence.

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.

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.

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.

The two are continuing their advocacy efforts into 2025 where they plan to advocate for rare on Capitol Hill during Rare Disease Week and virtually attend Rare Across America this summer.

LINKS

Avery’s Instagram: https://www.instagram.com/avery.nicole916/

Avery’s LinkedIn: https://www.linkedin.com/in/averyroberts916

Kelly’s Instagram: https://www.instagram.com/thekellyberger/

Kelly’s LinkedIn: https://www.linkedin.com/in/thekellyberger/

www.innovatinginclusion.org