Julia’s Legacy will always be about raising money for pediatric cancer research, and we are so appreciative of the support we have received from people in our community. And, you can count on us to call on you again!
We have taken JLOH to another level, Congress! On May 16 and 17 we lobbied the representatives of Senators Kirk and Durbin, and Representatives Davis and Lipinski. We asked them to support the STAR Act. STAR stands for childhood cancer Survivorship, Treatment, Access and Research. The good news is that all four of these senators and congressmen have now co-signed the bill, and it is assured of passage in the House. We are still working on the senate, but truly there is no reason for anyone to NOT support this cause!
While there, we heard a talk from the doctor in charge of the COG -- Childrens’ Oncology Group. This is an international group of doctors who research better treatments and cures for pediatric cancers. He said a couple of important things. First, he said that, if fully funded, childhood cancers could be cured in ten to fifteen years! Second, he acknowledged the underfunding of AYA -- Adolescent and Young Adult -- cancers and he is fighting fo increased research and funding on this very misunderstood subgroup of pediatric cancers. YAY!
This experience was a huge learning experience for us. We were trained on how to lobby Congress, and we did lobby Congress along with 215 of our fellow cancer parents and their children. Now that we have had this initial training we look forward to going back each and every year until, yes, patients with pediatric cancers are treated humanely and cured!