Partners in Advocacy

Partners In Advocacy

The Fly A Kite 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.

To date, we have helped many families who are recently informed about the devastating disease. The Fly A Kite Foundation support services range from weekly phone calls to families to one-on-one personal discussions helping families work through the emotional and financial roller coaster that will immediately affect their lives. We’re here to help – whether it’s to be a shoulder to cry on or working with our team to build out a cancer plan of attack that will help organize the family’s lives for what lies ahead. Our support services include:

• Picking the appropriate medical team for your family’s needs
• Commuting to and from medical treatment
• Managing your daily lives while living with cancer treatment
• Creating a Cancer Business Plan
• Insurance management
• Compassionate Drug requests
• Navigating multiple medical providers across multiple Intuitions
• Managing timelines and expectations
• Effective Communication Management
• Identifying the most effective Trail for treatment
• Coping with end of life discussions.

How We’ve Helped

We are currently working with several families in the midst of dealing with pediatric brain cancers who have sought our support and guidance. Some families have reconsidered treatment plans, explored alternative medical providers, worked to receive a highly valued drug under compassionate use, formalized a “game plan” or just vented about their frustrations and fears. Here is some of their feedback:

• “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 – and it helps to kind of let my brain run on and on in an email to you.”
• “When I was ‘grieving’ the other day, your son’s face just appeared in my mind. He was telling me, ‘Please don’t grieve, but fight for my child.’ I want to let you know how your family’s story inspired me”
• “Quick Update. We now have all approvals – Novartis, IRB and FDA. The paperwork from the IRB is being finalized today and will be sent to Novartis. They will ship the drug. We are looking to start Friday or Monday. Thank you again for all your help.”