Founder’s Story

Chandler Crews was diagnosed with achondroplasia at birth in 1993. Throughout the majority of her life, she has had multiple visits all across the country, a common occurrence for most patients, to see various specialists to monitor and treat the condition. Her inspiration to start The Chandler Project came from the lack of compassion that parents of newly diagnosed babies with achondroplasia were receiving from other individuals with achondroplasia when seeking information about pharmaceutical and surgical treatment options for the condition. She wanted to be that someone that she wished her parents could’ve had when she was first diagnosed – which was before the gene that makes up achondroplasia was even discovered!

In August 2010, she decided to undergo limb lengthening treatment, which made her gain over eight inches in height. This treatment also corrected the severe bowing (common for achondroplasia) in her legs. After her first lengthening, she went on to lengthen her arms and legs again with a new technique where a telescoping rod is implanted into the bone, making the procedure less invasive. This treatment tremendously improved her overall function, mobility, and independence.

Throughout her surgical treatment journey, Chandler shared her entire experience online at the height of social media. By sharing her experience, she gained quite a following; there had never been anyone with achondroplasia before who shared their experience with limb lengthening in real-time. (Most patient stories came from after the fact.) While sharing her experience, she developed a passion for advocating for others with skeletal dysplasias who were seeking surgical and pharmaceutical treatment options.