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Pediatric brain cancer and spinal cord tumors are the second most common cancers in children (after leukemia)(2). Brain tumors represents 20% of all pediatric cancer diagnosis and the incidence rate for cancerous brain tumors in children has slowly increased over time, according to a collaborative study from the Central Brain Tumor Registry of the US and the American Cancer Society (ACS)(3). More research is needed to advance treatment options for children and their families facing a brain cancer diagnosis, especially for children diagnosed with DIPG. Federal spending on pediatric cancer research, hovers just below four percent, across all types of pediatric cancer. DIPG is cancer’s biggest bully, yet it receives less than 0.1% of federal funding for all cancer. It is grassroot organizations like The Ayla Foundation, The Cure Starts Now, and the ChadTough Foundation (just to name a few) that committed to paving the way for advancements in research. The more awareness we can create the more funding we can raise for clinical research. The more clinical research we can support the more advancements in treatment options for pediatric brain cancer. More treatment options means hope for these young warriors and their families who greatly deserve it.
Raising awareness of DIPG is near and dear to the founders of The Ayla Foundation. The foundation is named after Tim and Erin Slivka’s forever six year old angel, Ayla Grace, who passed away from DIPG on June 29th, 2022.
Ayla was a healthy, vibrant, thoughtful, extremely smart, silly, sassy, social, creative, funny five year old girl. She had a big personality and a heart full of kindness. She loved to dance, sing, draw, paint, play soccer, play games (and win!), she loved science and wanted from the age of three declared that she wanted to be a “space scientist” when she grew up. She is a big sister to Asher and Aspen, her two younger siblings who adore her.
There were no signs or symptoms leading up to Ayla’s diagnosis, which is often the case with DIPG. The symptoms came on suddenly and severely within a few days and on July 6, 2021 Ayla was diagnosed with an untreatable and inoperable brain tumor, DIPG. Her battle was courageous and resilient; her beautiful six year old body went through through 45 rounds of radiation, five months of trial chemotherapy drugs, multiple chemotherapy infusions, ten MRIs, and countless pokes and prods … and through all the hard moments she still chose to smile, to laugh, to have as much fun as she possibly could, and to love deeply and endlessly.
Through her story and her heroic battle with DIPG she has inspired the lives of thousands of people. Her memory lives on in the hearts of her family and in the hearts of those that she touched. She infused light and hope into the world and her legacy lives on through The Ayla Foundation.
Our mission is to raise awareness and funding for research for pediatric brain cancer, specifically cancer’s biggest bully, DIPG.
Our purpose is simple: to provide hope for the children and families diagnosed with pediatric brain cancer, especially DIPG.
Honesty, Humility, Boldness, Purpose, Intention, Dedication, Transparency, Vulnerability, Collaboration, Sustainability.
Founder, Chairwoman
Founder, President
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