Smiley for Kylie is a non-profit dedicated to finding a cure for childhood cancer. The mission was not hard to decide upon because it was exactly what Kylie told us to do before she died: cure childhood cancer. I am excited to say that we just crossed a threshold. Since Kylie was diagnosed in April of 2014, her impact has now driven over $100,000 into childhood cancer research.
Our little non-profit ended 2017 with a flurry of giving that took us to $111,000!
I am blown away by the generosity and hard work of family, friends, and people who never even met Kylie. Kylie’s family would also like to thank our Board of Directors who support us in everything we do. We love giving away money to fund research and I would like to share a little backstory that will help explain what guided our decisions.
When Kylie was diagnosed with Ewing’s sarcoma, my employer urged me to have the DNA of her tissue mapped. He was funding genetic research at MD Anderson and facilitated the testing of Kylie’s tumor. The hope was that the results would show which genes were over-expressed and causing the mutation of cells. At the time, this type of research was making its way into adult treatments for cancer. We soon found out that with children, we weren’t there yet.
The mix of chemotherapy and radiation she received was decades old. In fact, if I had gotten the same cancer when I was her age, I would have received the same treatment. With all of our advances in science and medicine, most treatments for childhood cancers have remained the same for forty years. While our doctors received complete DNA results from her tumor tissue, they had no use for the data. Her treatment didn’t change one iota because just three years ago, genetic testing had yet to impact care in children. But that is changing.
CURE Childhood Cancer has committed $4.5 million so that Children’s Healthcare of Atlanta can establish The Aflac Cancer Center’s new Precision Medicine Program. Joining a handful of existing programs, this innovative entity will take the fight against childhood cancer to the genetic level by identifying the root cause of the child’s cancer and targeting specific therapies directly to the wayward cells. No longer will we paint with a broad brush. Soon we will be able to isolate the offending cells and destroy only them. With success, this could become frontline treatment in the future; a child is diagnosed, their genes are sequenced, and a treatment is tailored specifically to their cancer.
Based on our cancer experience, this is a great step for children fighting cancer and Smiley for Kylie is proud to be a part of it by awarding a majority of our funding to CURE for this purpose. I wish we had more to give.
Another portion went to 1 Million 4 Anna – a non-profit that focuses solely on Ewing’s sarcoma research. The organization was founded by the Basso Family in honor of their lovely daughter, Anna who, like Kylie, succumbed to the disease.
Could 2018 be the year of great breakthrough? We hope.
And how would I feel if in 2018 our little organization had a small part in finding a cure for childhood cancer? I would be ecstatic. It would be the realization of my newfound and unfortunate life purpose. But I know there would be that small side of me that would ache that it was discovered too late for my little girl. I admit that I’m jealous now when I see good results posted and when I see the bell rung signifying the end of treatment. It hurts just a little because in Kylie’s ten months of treatment, we never got good news.
It doesn’t take long for me to snap out of it. Of course I want every child to beat this disease. I’m jealous, not inhuman. That is what Kylie would want, too. And I figure if I can be just a little more like her, maybe we can make a dent in this thing