Matthew Zachary: Pediatric Brain Cancer Survivor
Matthew Zachary is the founder of the I’m Too Young For This Foundation, the only advocacy group working exclusively on behalf of cancer survivors and caregivers under the age of 40.
MATTHEW ZACHARY, Founder iy.org: Pediatrics has its own universe, adult cancer has its own universe, but it’s that middle group, that 15-39 population that’s really been largely ignored and that was me.
NARRATOR: Meet Matthew Zachary, founder of the I’m Too Young For This Foundation – the only advocacy group working exclusively on behalf of cancer survivors and their caregivers all under the age of 40. Zachary himself, a 12-year pediatric brain cancer survivor, has organized a nationwide following and given a voice to a rising movement.
MATTHEW ZACHARY: I was the guy who was desperate to find somebody who was my age. Where are all the young people at? I was the guy who needed advocacy in my fertility. I was the guy that was really having a hard time dating again and was having a really hard time accepting my physical changes and I have financial impacts from that stuff, even employment was a problem. So a lot of those sort of lifestyle issues still have not been resolved for that population.
NARRATOR: I’m Too Young For This began simply as a webpage listing Matthew Zachary’s favorite organizations for the under-40 crowd. Within weeks, it was written up in the New York Times, The Wall Street Journal, and Newsday.
MATTHEW ZACHARY: Because our website is so accessible and navigable, lots of hospitals started to refer to us and like the social workers or the oncology nurses, patient navigators, child life specialists, even some oncologists just started saying, “We want your stuff in our hospital.” Since April, we’re at 230-something cancer centers in nine countries who have our stuff, give it out to their young patients. And then literally four months after we launched, we were ranked a Time Magazine, Best 50 Websites of 2007.
NARRATOR: In addition to launching I’m Too Young For This, Matthew hosts a popular weekly web radio program, The Stupid Cancer Show – the first nationally syndicated webcast for young adults affected by cancer. But it’s music that was Matthew’s first passion; a trained concert pianist, he has recently released Scribblings, an original CD of his own compositions.
MATTHEW ZACHARY: In the wake of my survivorship, like by not dying what I did was I wrote music, that’s all I had at that point. And music was such a powerful tool for me to express myself and just get it out, get it out of my system and figure out a way to make sense of the madness in a weird way. And as I started doing more concerts and speaking engagements, I came across scores of other young musicians who were cancer survivors that also chose to write music as a result of their experiences. And I just saw so much potency, so much energy, passion, and power and creative force that I decided to just bring everyone together under one umbrella called The Artist’s Survivorship Coalition and I had a goal to just someday make a benefit CD of just original songs by all these artists who are young, affected by cancer and tonight is the, sort of the fruition of that.
NARRATOR: A benefit concert featuring some of the artists took place recently at The Derby, in Los Angeles.
MATTHEW ZACHARY: It’s all about art and creativity, expressing yourself and connecting – that you’re part of something, you know. You didn’t go through stupid cancer for nothing and we’re here, this is who we are, this is what it means to be a survivor and damn it, we are too young for this.
NARRATOR: One of Matthew’s focuses now is in trying to improve survivor rates in the young.
MATTHEW ZACHARY: A report came out from the National Cancer Institute, that people between the ages of 15-39 have been ignored by the Cancer Continuum Research and Advocacy for 30 years now. And the scary part of that report is that survivor rates for young adults remain unchanged over the past 30 years. If I got the same cancer tomorrow that I had 12 years ago, my prognosis is identical and that’s scary as crap and that’s not right.
I would say we’ll understand cancer in the same way we understand HIV and the same way we understand diabetes, but they were all death sentences at one point and today I hearken them to life sentences, where it’s about being vigilant, being a self-advocate, knowing your doctor. I didn’t die; I might get it again, but I’m vigilant about it and I’m trying to make the most of the time I have and just to live. So that’s the message – how to understand cancer is to just live.
NARRATOR: For more information on the I’m Too Young For This Foundation, The Stupid Cancer Show, or any of Matthew Zachary’s current projects, please check out ImTooYoungForThis.org.