On February 27th, 2023 our beautiful Adelia was diagnosed with an incurable brain tumor called Diffuse Midline Glioma. She was given a death sentence and 9-12 months to live. Today, after 4 brain surgeries, 63 radiation treatments, and countless other pokes, scans, and procedures, Adelia is 15 months post-prognosis and still fighting with all her might. With only experimental phase 1 clinical trials as treatment options, we need to do better for Adelia and all of the other children facing this monster of a disease.
This year we will be dedicated all of our fundraising efforts to a new and desperately needed Brain Tumor Center that bridges Dana Farber and Boston Children's Hospital. This center is being spearheaded by Dr. Baird, arguably the best pediatric neurosurgeon in the world, and Dr. Filbin, one of the most brilliant and motivated researchers in this space. This center strives to develop personalized, precision medicine, where they can deliver rapid real-time molecular analysis to allow more effective treatments to start sooner. The center will also be developing support systems for families, a vital necessity and currently a missing piece in providing high quality continuum of care. Click here for more information about the Brain Tumor Center.
Please join us as we run for Adelia and all of the other families and children's facing this diagnosis. We will be raise vital funds, elevate awareness about pediatric brain cancer, become part of the cure for this horrific disease.
