When we found out our son was going to have Cooley’s Anemia, we started educating ourselves about that genetic disorder and the treatment he would require. I discovered there would be a considerable health care cost and researched potential ways to address this issue. I decided I would try and improve the system (healthcare) not only for my son but also for other families. Since that time (23 years ago), I have been involved in advocacy through several organizations and continue to write, call, and advocate for accessible, quality, and affordable healthcare.

-Story from a parent advocate