Amy Meacham - Xtraordinary Joy

On this episode, we will hear from Amy Meacham, founder of Xtraordinary Joy. Xtraordinary Joy is a non-profit that funds research into an ultra-rare X-chromosome deletion disorder (Xq27.3-q28 deletion) that affects Amy’s daughter. The disorder is so rare that they have only identified 20 other children in 7 different countries with it. We will talk about how the disorder impacts the lives of those who have it, what research is being done to treat it, and how that research could be used as a model to treat other ultra-rare disorders and diseases.