Fly A Kite Foundation Information

The Fly A Kite Foundation was founded in August 2014 by David and Deena Bernstein after the loss of their son Zachary. Zachary was an 11 year-old boy who was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) from age 10. DIPG is a type of brain tumor found in the Pons, the part of the brainstem near the lower back of the head. DIPG affects children, with most diagnoses occurring between 5 and 10 years of age. DIPG accounts for 10-15% of all brain tumors in children, with about 150 new diagnoses each year. Fewer than 10% of children diagnosed with DIPG survive two years from diagnosis. The Fly A Kite Foundation is dedicated to three main objectives: 1. Creation of Custom Art Packages The foundation will provide custom art packages for children with pediatric brain cancers. These packages are intended to provide a creative and therapeutic outlet for children suffering from diminished motor function. We have partnered with a Neuro-Occupational Therapist who will help design these art packages based on the therapeutic needs of each child. We hope to empower these children with self-expression and show the beauty that can exist, even during difficult times. 2. Funding for Research The foundation will provide funds for laboratory & medical research, clinical trials and not-for-profit organizations directly impacting the search for a cure for pediatric brain cancers. A team of medical professionals has been selected to serve on our medical advisory board. They will write grant criteria, evaluate requests for research funding and make medical referrals. 3. Providing Parent/Patient Advocacy Support The foundation seeks to provide parents of newly diagnosed patients with support and guidance as they try to define and navigate treatment plans. The members of The Fly A Kite Foundation are passionate third parties available to guide, organize, support, listen, identify treatment options, and help bridge communications between family and medical provider. See less