Why it's important.
DIPG has no survivors in over 35 years of clinical record and is, like all other childhood cancers, marginalized as "rare" and thus undeserving of research funding. Most of the high-profile cases of terminal pediatric cancer in the news this year have been DIPG, but did you know it? Even people in the childhood cancer community don't know what it is! So, I'm documenting my attempt to encourage the President and my Representatives in Congress to declare a National DAY for DIPG. For too long, families have been told that no live-saving therapies have been developed in all this time because the "numbers aren't great enough for investors". DIPG is responsible for 80% of pediatric brain tumor deaths, the leading cause of cancer-related death in children. It is hardly irrelevant, and it is a completely life-decimating experience for those who know it.
What I'm doing.
I am documenting my journey to our State Capitol and to Washington DC as a childhood cancer advocate and DIPG awareness activist, making observations about how the campaign for a National DIPG Awareness Day is received, both by other childhood cancer advocates and Congressional representatives, and to investigate further the challenges to raising awareness for any pediatric cancer. I will also be attempting to speak with at least one official at the NIH, and interviewing DIPG parents about their experience and those who have started foundations in memory of their departed child. Three neuro-oncologists specializing in DIPG will be interviewed, Dr. Girish Dhall, Chair of the Neural Tumors Program at Children's Hospital Los Angeles, Dr. Monje at Stanford School of Medicine, and yet to be confirmed, Dr. Souwedaine at the Weill/Cornell Medical Center.
Why I should be the one to do it.
This is a personal study in which I am making myself the guinea pig, for my inspiration comes from the loss of my 3 year-old son Jack to DIPG. I am renting some equipment but basically am recording all the information myself, by selfie video, writing, and talking with people. I will be representing Jack's Angels Foundation for DIPG Research and Support at CureFest in Washington DC on September 20th, which should be fine material in and of itself!--and as a colorful addition of the personal experience of a DIPG parent who has started a foundation with very little, and fighting hard to continue raising awareness. This experience, for the audience, could be applied to many different sets of circumstances where raising awareness is critical to changing an injustice and/or indifference to suffering in any culture.
Then what, and where goes the money.
This project is the first step towards making a documentary film about the DIPG experience. My primary goal with the project is to write several pieces for publication in print and on the web, ultimately to further getting a National Day for DIPG, but I'm looking forward to the next step as well. The money will be spent mostly on logistics--air-fare, rental cars, and the basics of travel necessities. Any monies received above and beyond the stated amount will go towards the basics and further developing and producing this project. I'm asking for a small amount that would, at the very least, help me get where I need to go. My greatest hope is that whatever money is donated will return to the world ten fold in a helpful and informative project.
Risks and challenges
I think the biggest "risk" is that the project turns out differently than what I imagine; I'm sure it will. This is an experiment, basically that I'm documenting. I'm documenting my effectiveness as an individual in our system to instigate change, and the values of said system. Money has always been the greatest challenge for me, personally, but again, more in my mind than in actuality. I have been very fortunate to have pretty much exactly what i need, no more no less. I don't like waste, so all I can really assure the reader is that the project will be completed, hopefully in the time-frame allotted--I would like to submit one of my articles to Wellesley and Time magazine before December 1st. I feel confident in that.Learn about accountability on Kickstarter
- (12 days)