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Stupid cancer: Young cancer survivors find a voice of their own

Matthew Zachary, the founder of I’m too Young For This community and
advocacy web site for young cancer survivors, is no stranger to THCB or Health 2.0, but he has never before told us his story at length. So here it is. Also, Zachary wants to invite survivors, friends and family to join him for i[2]y’s 2nd Annual Stupid Cancer Gala complete with complimentary cocktails, door prizes, DJ survivors and special guests! Come one come all. Stupid cancer! Go here for tickets and more information, visit . Discount web-only ticket prices and sponsorships still available.

Whether for good or for bad, I remember it all too well. December 27th, 1995. 

Al Gore had just barely invented the Internet, movie trailers for Independence Day shocked people to the core and we were all making fun of Bob Dole as he tried to become president with his codgery monotone.

I was 21 and six months away from my College graduation en route to film school with ambitions to become the next John Williams. I’d been classically trained for over 10 years with a romp through Jazz, new age, electronica and pop/rock. I wanted nothing more than to be creative and write music for film and television.

But first, something had to explain why my speech was slurring, why I kept fainting uncontrollably, why I had crippling headaches and – most importantly – why my left hand, my dominant hand, had lost all of it’s fine motor coordination, rendering me unable to sit at the piano and play, grip a pen or type on the computer.

I had an MRI that day and the next 6 months were a blur. It went
something like this: scan, brain tumor, surgery, cancer diagnosis, lots
of radiation therapy. And all I wanted to do was graduate on time and
play the piano.

That was 12 years ago and, considering I was given a 50 percent chance
of living for five years, I think I can safely say it’s been fun proving
them wrong, although they did say my hair would grow back. 

Instead of heading off to film school, given that it took me five years to
regain full use of my left hand and play piano again, I landed in IT,
marketing and advertising for several years. Upon the release of my
first solo piano album (which was written in my head all the years I
was assiduously retraining myself), I was hurdled back into the same
cancer world I was so excited to have finally built a new life trying
to escape from.

Watch Zachary’s video describing why he started i[2]y.

Needless to say, over 200 concert appearances and speaking engagements
later, I’ve since quit my cushy job on Madison Ave and given in to
destiny by reinvesting myself, mind body and spirit, whole hog into the
world of cancer advocacy. Bottom line is that no one should have to go
through what I went through but, more importantly, if they do, they
should not feel like they’re the only one on the planet.

You see, isolation is the number one psychosocial issue facing cancer
survivors between the ages of 15 and 39, a population referred to as
young adult.

I took up the cause of young adult cancer advocacy because little had
been done to recognize this oft forgotten community within the cancer
continuum. Out of the 1.3 million cancer diagnosis each year, less than
6 percent are under age 40. Roughly 68,000 young adults are stricken
with a cancer diagnosis each year, up 200 percent over the past 20
years. On top of this, survival rates for young adults remain largely
unchanged over the past 30 years. Meaning, if I were diagnosed
again today with the same cancer, my outcome would be the same even in
spite of all the major advances in prevention, early detection, medical
technology and medicine, according to data from the National Cancer
Institute.

So, early this year, I founded The I’m Too Young For This! Cancer
Foundation, a nonprofit advocacy group whose mission was simply to end
isolation for young adults affected by cancer. As the only national
voice for Generation X cancer, we quickly rose to become a global
support community with reach to nine countries.

One month after our launch, we were profiled in the NY Times and just
six months after our launch, we were ranked a TIME Magazine Best 50
Website 2007. Soon after I was invited to join the prestigious Google
Health Advisory Council to
represent the interests of the more than one million young adult survivors in the US.

Most recently, thanks to a new relationship with Lifetime Television,
millions of viewers watched as I guest starred on an episode of "Side
Order of Life" as the host of a hip cancer support "happy hour" where
one of the show’s main characters (a survivor herself) goes to hang out
with like-minded peers.

Cancer needed a wakeup call and I believe that, by energizing GenX, we
can create lasting social change because this is generational health
disparity at it’s most powerful. 

There are currently no clinical trials or cancer research projects
focused on young adults. Why? We’re too small of a population. The
young adult cancer problem is only going to be solved by and within the
young adult community; from the demographic that brought us MySpace,
FaceBook, YouTube. It is my personal mission not only to mobilize and
activate GenX but develop our own "me generation" philanthropy model to
solve our own problems with the same fervor we had for Sanjaya.

I look back and wonder if I would do it all again if I could. Yes I
would. Today, I’m married, fertile (again), an author, a radio show
host, a blogger and big mouth rabble-rouser in the cancer universe. I
couldn’t ask for a better life and I have cancer to thank for it. I
know it sounds weird but here we are, and I wouldn’t rather be anywhere
else.

This is why we fight – because remission is not a cure and survivorship is all the rage.

Stupid cancer. Survivors Rule.

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Happy Birthday, Matt from the gang at THCB!!
And many, many more to come!!
John