The Fly A Kite Foundation, Inc. – Time To Soar!

by David Bernstein

Friends of Zachary,

With great pride, we announce the launch of The Fly A Kite Foundation, Inc. The Fly A Kite Foundation, Inc. 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 and suffered from 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 near the top of the spinal cord. DIPG primarily affects children, with most diagnoses occurring between 5 and 7 years of age. DIPG accounts for 10-15% of all brain tumors in children, with about 100 – 150 new diagnoses each year in the United States and about 300 per year in all of North America and Europe. Unlike many other pediatric cancers, little progress has been made toward improving treatments and cure rates during the last few decades. Unfortunately, fewer than 10% of children diagnosed with DIPG survive two years from diagnosis.

Background

Because of the location of the tumor in the Pons, Zachary’s motor functions were affected. He found a way to express himself through art, mostly painting. He felt a sense of pride in each completed project. Art is all about the individual and his/her creative expression. Art does not judge or discriminate. Children can use all forms of art to express the dreams they still hold on to during their time of illness.

Why Fly A Kite

Disney’s 2013 hit movie, “Saving Mr. Banks”, depicted the untold back story of how the classic “Mary Poppins” made it to the big screen. Zachary saw this movie in January 2014 during a rough time in his treatment. The song “Let’s Go Fly A Kite” was sung during an uplifting scene and the music inspired Zachary to sing this song with great enthusiasm. We felt such joy as we listened to him belt out the lyrics in such a spirited way. This song became special to many people who knew him and it was sung during the 2014 Spring Concert at his middle school.

The Mission

The Fly A Kite Foundation, Inc. is dedicated to three main objectives:

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 Patricia Kearney, a Neuro-Occupational Therapist who works for Transitions of Long Island (part of the North Shore-LIJ Health System), an outpatient rehabilitation center specializing in helping people recover from neurological injury or illness. Patricia will help design these art packages based on the therapeutic needs of each child. Research indicates that art therapy can improve the quality of life of those suffering with illness and can even help with healing. We hope to empower these children with self-expression and show the beauty that can exist, even during difficult times. The children’s art projects will be presented in an online virtual gallery and we anticipate holding a live art show in the future.

Funding for Research

The foundation will provide funds for laboratory research, 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 hand selected to serve on our medical advisory board. They will write grant criteria, evaluate requests for research funding and make medical referrals. The Medical Advisory Board includes:

• Sharon L Gardner, M.D., Associate Professor; Department of Pediatrics (Oncology Division), NYU Pediatric Hematology Oncology, NYU Langone Medical Center

• Oren J. Becher, M.D., Assistant Professor of Hematology-Oncology; Preston Robert Tisch Brain Tumor Center, Duke School of Medicine – Cancer Institute

• Katherine Warren, M.D., Head, Pediatric Neuro-Oncology Section, Center for Cancer Research, National Cancer Institute

• Michelle Monje, M.D., Assistant Professor of Pediatric Neurology, Stanford School of Medicine

• Mark M. Souweidane, M.D., Vice Chairman, Neurological Surgery, New York Presbyterian / The Weill Cornell Brain and Spine Center

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, Inc. are not trained medical professionals or social workers but rather passionate third parties available to guide, organize, support, listen, identify treatment options, and help bridge communications between family and medical provider.

We are also working to build additional areas of the foundation including fundraising events, speaking engagements, and partnering with hospitals and other foundations.

Transformations

The GiveForward website recently announced they will be increasing their fees for processing online donations. Effective September 1, 2014 the Friends of Zachary Give Forward page will be disabled. Additional donations will not be accepted via the site. Should you wish to make a donation, a PayPal account has been established (copy and paste the following link into your browser)

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclickhosted_button_id=DEV5JCXPRAWGG

Checks payable to The Fly A Kite Foundation, Inc. may be mailed to:

The Fly A Kite Foundation, Inc.

c/o The Bernstein Family

P.O. Box 32

Lynbrook, NY 11563

The necessary paperwork has been filed with NYS and the IRS and we have been granted initial approvals to operate as a 501 (c)(3) charity. While awaiting complete IRS review and approval, the foundation is considered an active non-profit but does not yet have full IRS recognition. The review and approval process can take approximately six months however; the IRS has indicated that they do not anticipate any issues with the approval. Donations made as of August 1, 2014 will receive a confirmation letter containing the tax identification number of the foundation for your tax filing records.

Website

The foundation website is under construction and is expected to take several months to complete. Please check www.flyakitefoundation.org often as we continue to build and develop the site.

Social Media

We anticipate building out all forms of social media to enable us to share the inspirational stories and artwork as well as communicate about our progress and developments.

In Action: Advocacy

We are currently working with several families in the midst of dealing with pediatric brain cancers and have sought our support and guidance. Some families have reconsidered treatment plans, explored alternative medical providers, formalized a “game plan” or just vented about their frustrations and fears. Some of the comments that have been made include”

• “Thank you, David, for all the help!”
• “Thanks so much for checking in. I feel less alone knowing you’re out there thinking of me and {my family}.”
• “From the very first post of yours that I read, I felt we shared that same connection.”
• “You have good questions though and it helps to kind of let my brain run on and on in an email to you.”

We have already started to help fund the some of the most progressive labs and programs focusing exclusively on the research for Pediatric Brain Caner. This includes The Becher Labs of Duke University and The Children’s Brain Tumor Project of Weill Cornell Pediatric Brain and Spine Center.

Thank you to all our supporters for your kind words and generosity over this past year. We are very proud of the work we have done so far and look forward to empowering these children to create beautiful works of art. Please direct any questions, comments or feedback to david@flyakitefoundation.org or 917-846-0414.

On behalf of The A Kite Foundation, we thank you from the bottom of our hearts.

David & Deena Bernstein

“Providing children with pediatric brain cancers the artistic tools to soar”