Rare Disease

Chad “Shorty” McDaniel — More Than Breaks

The morning routine of a champion often begins in the quiet hours before the world wakes up. For Chad “Shorty” McDaniel, the day starts long before the sun rises, much to the playful chagrin of his wife of nearly twenty-three years. Moving through his home, McDaniel relies on a seamless blend of tailored accessibility and … Read more

The Fight for Rare Disease Research Including Charcot-Marie-Tooth

For families facing ultra-rare diseases, the diagnosis is often just the beginning of a much harder story: years of uncertainty, high treatment costs and a race against time for parents. When Terry Pirovolakis’s youngest son, Michael, was diagnosed in 2019 with SPG50 (Spastic Paraplegia Type 50), an ultra-rare, progressive brain disorder that primarily affects children … Read more

Firebuds — Disney Junior Shines Spotlight on Disability Inclusion

“Firebuds” weaves disability and health topics into many of its storylines, and characters with disabilities are featured in several episodes. Disney’s commitment to disability inclusion is also evident in the casting of actors with disabilities to voice select “Firebuds” characters. ABILITY Magazine caught up with Sammi Haney who voices “Piper” and Henry Shipp, the … Read more

Chandra Wilson – From Grey’s Anatomy to CVS’s Mitochondrial Anatomy

Dear theater, Grey’s Anatomy, and everything Emmy nominated Chandra Wilson fans! ABILITY is happy to share our interview with Wilson. Born and raised in Houston, Texas, she is an upbeat, positive, light of a human. Drawn to the stage from a very early age, seems like theater was her first love and something she found … Read more

Together, we aren’t rare! Let’s talk about Ehlers-Danlos syndrome

Twenty-five million people in the US are affected by rare diseases – many of them are genetic and life-limiting. One of these conditions is Ehlers-Danlos syndrome (EDS), an unknown and neglected disorder of the connective tissue that can lead to severe disability. Over the last years, popular figures like Jameela Jamil and Mandy Harvey publicly … Read more