Full heart, clear eyes...and sore legs
October 06, 2016
BENEFITING: FANCONI ANEMIA RESEARCH FUND INC
EVENT DATE: Oct 08, 2016
The back story
A year ago, in August 2015, our lives changed forever. We learned that our son, Zach, has a very rare genetic disease called Fanconi Anemia (FA). Among other things, children with FA can expect their bone marrow to fail at around age 6-8, and they live with a dramatically high risk of cancer.
It was a life-changing shock to hear that Zach would have to go through a harrowing bone marrow transplant; and even assuming he survives that, odds are he'll get cancer by the time he's 20. One can either live in fear of that, or move on and fight back. Please join us in the fight.
What exactly is this event?
On October 8th, I'll be running (ok, run/walking) in the Rock N Roll Brooklyn Half Marathon. My goal is to use this run to raise funds for - and awareness of - the fight against Fanconi Anemia. With all the doctor appointments, hospital visits, needle sticks, and biopsies that Zach has already endured in his 5 short years, the least I can do is drag myself through 13 miles!
Given the underlying nature of FA (it causes DNA repair failure), the typical cancer treatments are fatal. Which is where you - and the Fanconi Anemia Research Foundation (FARF) - come in.
FA is an "orphan disease", in that it affects fewer than 200,000 people nationwide. Nearly all of the funding needs to come from families affected by FA. The good news is that research into FA brings scientists closer to understanding how to treat and even cure cancer.
FARF is consistently rated 4-stars by Charity Navigator, and they have funded 183 research grants since inception in 1989. In that time, bone marrow transplant success rates have increased from 0% to 87%. With your support, imagine what further progress we can make in the fight against Fanconi and cancer.
Your donation gives hope to Zach and the hundreds of other children, so that they don't have to live with that sword hanging over their head.
Your donation gives hope that maybe the gene therapies being explored right now can be expanded into cancer treatments that reduce or eliminate the need for radiation and chemo.
Your donation gives Zach and the other children in our extended FAmily the chance to lead fuller, longer, and healthier lives.
Your donation makes a difference. Thank you for your contribution.