Ependyparents

This is a non-profit. I created this group solely for the families, managing the support for roughly families and adults worldwide effected by this disease. It was built due to my son's own battle at 8 months old. We lost our battle, not due to relapse of cancer, but due to the toxicities of the harmful treatments. I continue to work with families and mentor them as it is my sons legacy after his 4 1/2 year battle when we lost him. Cancer is grossly underfunded and HIPPA is another issue with pediatric that should be an option. The language barrier is no always easy this this tumor / tumour type but I have managed to get around that and support many and continue to. Mentors donate their time to walk families through treatment and provide the newest research available.