Courageous Parents Network
Courageous Parents Network was founded by Blyth Lord based on her experience parenting her daughter Cameron following her diagnosis of Tay-Sachs. CPN is a community of parents and providers who have traveled the overwhelming journey of caring for children with life limiting illnesses. They have extensive resources and are a warehouse of knowledge from experts who know the challenges families face.
NTSAD is “Leading the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1 and Sandhoff diseases.” This organization is continually driving research, forging collaboration and fostering community. Access to this resource provides information on everything from clinical trials to accessing their chapters and affiliates.
Akron Children’s Hospital
Akron Children’s Hospital is one of the top-ranked children’s hospitals in the country. It delivers care through two hospitals and more than 50 urgent and primary care locations.
Cleveland Clinic Children’s
Cleveland Clinic Children’s is consistently rated among the “Best Children’s Hospitals” by U.S. News. It has three facilities and more than 300 pediatric specialists who are leaders in specific conditions.