David Bernstein

David is Co-Founder and President of The Fly A Kite Foundation. 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. Research indicates that art therapy can improve the quality of life of those suffering with illness and can even help with healing. That’s why we have partnered with a Neuro-Occupational Therapist who will help design art packages based on the therapeutic needs of each child. We seek to empower these children with self-expression and show the beauty that can exist, even during difficult times. Art projects created through our foundation will be presented in an online virtual gallery and we anticipate holding a live art show in the future.

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 and 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.

Throughout the course of Zachary’s illness, David was instrumental in planning and managing his treatment plan. He organized a collaborative medical team with medical professionals from NYU Langone Medical Center, Duke University, Stanford University, National Cancer Institute and New York Presbyterian to work together caring for and treating Zachary. As a result, David has established relationships with top medical professionals working to treat and cure pediatric brain cancers including the FDA, pharmaceutical companies and thought leaders in the cancer space.

David devotes much of his free time to building awareness about pediatric brain cancer, establishing industry relationships, and learning about the latest developments in treatment and care for children with brain cancer. In addition, he actively supports families with children battling brain cancers, from building treatment plans after first diagnosis to end of life conversations.

David blogs and shares inspirational stories about children overcoming obstacles, new treatment options and the changes the medical community is making. David has published articles and newsletters and has been interviewed by several media outlets. David@flyakitefoundation.org