My wife Robyn and I’s first born son Ezra died in 2010. He had been diagnosed with cancer on the 400th day of his life, and lived exactly 800 days. Ezra battled cancer half his life. He smiled through most of it. He was funny, curious, and compassionate. He flirted with strangers. He learned to walk and to talk in hospitals.
We learned a lot from Ezra, like you can dance and laugh through cancer. We learned the pain from some losses never goes away; it just moves from your skin to your bones. We learned childhood cancer is not yet beaten, and that incredible, strong, fragile families are also learning this every day.
Five years ago — a month after Ezra died — Robyn and I started Because of Ezra, a 501(c)(3) non-profit with a goal of finding and funding a cure for neuroblastoma and other childhood cancers. It has grown, giving over $700,000 to support patient-affecting childhood cancer research, including the first ever national clinical study approved for all incurable childhood cancers, and trials of a drug called DFMO which we hope is stopping relapse (over half of kids who beat neuroblastoma relapse — and there is no currently known cure for relapsed neuroblastoma). The results are promising.
Largely though, we have been working on Because of Ezra out of our margin. Robyn is a full-time mom, and our stubborn and joyful son Charley (born a premature twin; his brother Price died at one week old) has medical issues which take up much of her time. I had a couple tech companies I co-founded which took most of my time. (ModMy, LLC is a network of community sites with over 2m members who love modifying their phones, and Laicos is a Tampa-based Startup Studio and mobile / web creative agency.)
As I’ve spent these 6 years living in the childhood cancer world, meeting the families and children, the researchers and clinicians… I’ve fallen terribly in love. Childhood cancer is a crushing, inspiring world to live in. Daily, we are reminded of Ezra and our loss, and simultaneously built up as we meet more and more families battling and beating neuroblastoma. We are blanketed in loss, knit together by strength people should never have to know they own, and we stand at the front of a war, trumpeting a battle cry.
I’ve loved technology since I was young, and have had a ton of fun (and some success) building companies in that space, but my heart was being pulled strongly toward continuing Ezra’s fight, and that of so many other kids we’ve met since he died. I spent 2015 wrestling with the thought of going full time with Because of Ezra. I had the conversation with Robyn many times, and a few people I respect in the childhood cancer world.
One of those conversations was with a gentleman who lost his daughter to neuroblastoma, and who has since with his wife (and team) raised over $100m toward beating childhood cancer. Over coffee, I asked him how it was moving full time to a non-profit. He told me it had been a big change, but they’d never looked back. That he and his wife knew they had to push this, and ran full into it. The conversation resonated with me. I had another conversation with a friend doing similar work, and his words were even stronger: “If I wasn’t clear — please allow me to state it now: Do this full time.”
And so, starting the first week of 2016, I am. I have resigned my position as CTO of Laicos, giving it to our talented Senior Architect Yeng Yang. I will remain a board member and advisor in Laicos, which my co-founder Ryan Negri will continue to run. Beating childhood cancer is my main goal now. And, surrounded by a powerful group of parents, kids, advocates, supporters, scientists, and clinical doctors, we will achieve this goal.
Because of Ezra has massive plans. We are working with the NMTRC and Dell on funding and advancing promising personalized medicine research. We are funding and pushing forward a drug called DFMO with very few side effects, which we hope is stopping relapse in kids with neuroblastoma. We pay attention to the entire neuroblastoma research landscape, and maintain relationships with other passionate groups who are doing our type of work.
We are beating childhood cancer.
Robyn told me, when proofing this post, Ezra was all the parts of me she loved. To know his name has some small attachment to the work we’re doing, affecting so many kids who are fighting childhood cancer now… it’s a bittersweet feeling. And really, though we started this because of Ezra, we continue it because of so very many children.
Our Because of _____ program recognizes we fight in many more names than Ezra’s.
I’d love your help. We’ve built an incredible network with Because of Ezra and the many people involved in furthering our mission. As I dive full time into this, we’ll need even more help to make our goals a reality. Please, reach out to me at kyle@becauseofezra.org to partner with us. We have big, audacious things we’d like to do — and the right support and partners will make them happen. Whether you’re a parent needing to connect to someone or know what treatments are available, or maybe wanting to partner with us through our Because of _____ program, or a corporate partner looking for an impactful charity to align with, or a volunteer wanting to help… there are many opportunities, and we need your help. Let’s continue to be an ever-growing fist in the face of childhood cancer.
↑ Ezra. For more of his story, read becauseofezra.org/why.
If you’d like to be a part of the work being done to cure childhood cancer, we welcome your involvement. If you are a parent seeking information on clinical trials we help to fund (or anyone with a comment), you can reach us at becauseofezra.org/contact. You can support Because of Ezra financially at becauseofezra.org/give. Because of Ezra, Inc is a 501(c)(3) tax-exempt organization with the Internal Revenue Service. Our EIN is 27–4013571. This article was originally published on my personal blog.
