It's been a long 8 months. Full of heartache, sadness, emptiness..and hope. Our friends are amazing with their love and support. We've met incredible people dedicated to curing childhood cancer and children's health. We've learned about the obstacles that are in the way, but can be overcome. We're figuring out how to really make a difference.
We also know we have to move faster. Cancer is the #1 killer of kids under 20, and more kids today are suffering from cancer - including one of Naya's closest friends. I cry for each child I know, and it's one too many.
Our first lesson - data needs to be shared, in real time. Real time genetic, clinical and research data shared between scientists surfaces new ideas, enables innovations and accelerates finding cures. More ideas will lead to curing childhood cancers.
Our second lesson - private funding is critical. The NIH has limited funding and the grant system creates competition for that limited funding. This can keeps institutions from sharing data real time. Not all children's hospitals share data. Isn't that crazy? Knowing that infuriates me!
Donors and a few leading institutions, including The Children's Hospital of Philadelphia and the University of California at San Francisco, have created consortiums that share information between scientists and encourage collaboration between specialists (immunology, oncology, neurosurgery and radiology). With their leadership, more hospitals are jumping on, and sharing data. Yes, this is "Big Data" for those of you interested in technology.And, this enables Personalized Treatments, aka Precision Medicine.
Private funding is required to fund these new trials and consortiums. That's where we you come in. It's time for the Parkway Run. We want to raise more than $100,000 again this year.
Sign up to run or walk with us, and please donate by clicking here.
Eight months ago, Naya passed away. Her absence is felt deeply in our hearts every day. I miss her laughter, and love of simple things - from making crafts, to swimming, playing with the dogs and making dinner with Hank. Naya's absence is the driving force behind our efforts to find cures for childhood cancer. That was her only wish, and we're committed to making it real. We love you Naya.