Ruby's Campaign for GAND

In March 2023, our daughter Ruby was diagnosed with GATAD2B-associated neurological disorder. We had a healthy pregnancy, uneventful delivery, and no known history of genetic conditions. After 4 months of testing and searching, we were shocked to learn that Ruby has a rare neurological disorder that will affect her cognitive development for life. 

Most patients affected by GAND have speech apraxia, low muscle tone, and varying degrees of health and feeding difficulties. With only 310 known cases worldwide, we felt helpless, desperate for information, and alone — until we found Helping Hands for GAND.  

Helping Hands for GAND is a volunteer-run nonprofit organization that funds and champions research grants, patient registry development, accessible information, and research-led conferences for the GAND community. They're committed to providing resources, making connections, and advocating for future research on behalf of patients affected. Though so much is unknown, and we take Ruby's progress one day at a time, Helping Hands offers a sense of community and hope — an 'onwards and upwards' mentality that keeps us pushing forward.  

Ruby's path will be a different one, but no less full or large. She may never communicate or move in the way we imagined, but we're determined to fill her world with fun, laughter, love, and energy. We're committed to giving her the opportunities, therapy, and care she needs to succeed. Through Helping Hands, we're grateful to be connected to parents from around the world who have these same dreams and aspirations — who want nothing more than for their children to live full lives and have access to information and resources. 

Helping Hands is just scratching the surface and we look forward to supporting their mission for years to come. We can't thank you enough for your generosity and willingness to do the same — it means the world to us. 

Ruby, Kelsey & Aidan