Kelly Berger and Avery Roberts are dynamic, empowered, rare disease warriors and disability champions who share their stories, spark conversations, and build a world that listens and activates real change. Their spirited advocacy is bold, personal, and impossible to ignore. They're the loudspeakers for the voices that are too often whispered.

 

They both live with the ultra-rare form of congenital muscular dystrophy (CMD), Collagen 6. They've turned their lived experiences into powerful platforms for global change. The fierce changemakers are driving visibility, authentic representation, and access, championing the next generation for a brighter, more inclusive future.

 

Their work spans public speaking, legislative advocacy, mentorship, media, and the entertainment world—all with a shared mission of creating a world where disabled voices are heard, seen, and valued. They regularly meet with legislators at both the state and federal levels to fight for public policy around rare disease, disability rights, Medicaid, DEI, and 504 protections, ensuring that the future of the disability community is not dismissed or left behind. 

 

Kelly and Avery partner with numerous patient advocacy organizations in the rare disease space. They spearheaded the USA portion of the inaugural World Collagen 6 Awareness Day, dedicated to raising visibility for those living with Collagen VI-related dystrophy, fostering community and global collaboration. They also proudly serve on the Board of Directors for One Rare, an organization focused on providing resources and opportunities that improve the lives and futures of young adults living with rare disease, through education, mentoring, recreation, and peer support.

 

They’re thriving, owning, and redefining unstoppable. Wheels don’t slow them down; they launch us forward with style, strength, and a whole lot of grace.