Giving $250,800 to NMTRC neuroblastoma trials

To close out 2015, I wrote a post sharing I’d be going full time with Because of Ezra in 2016. For my first official day “on the job” (although I’ve held this job since we founded in 2011 – just part time), we headed to Grand Rapids, MI, to present a check to the NMTRC toward their neuroblastoma trials.

Last year, Because of Ezra hit some incredible milestones in our fight against neuroblastoma and childhood cancer.  We hired a new Assistant Director (Noelle Muniz), helped facilitate the opening of a new clinical trial at All Children’s Hospital, launched our Because of _____ program to better partner with families fighting cancer, held two hugely successful fundraiser events in Los Angeles and Tampa, and were once again the beneficiary of the second annual Brighthouse Networks Enterprise Solutions Charity Classic!

Through the generous support of people like yourself, we were honored to give $250,800 (Ezra lived 800 days) toward two promising trials. The first, a continuation of the DFMO trials we’ve been funding, hopes to stop neuroblastoma relapse. The paper being published this year on the previous DFMO trials the NMTRC has completed will show promising results. We are proud to be a part of continuing the push to make this treatment available to all children battling neuroblastoma.

The second trial, called PEDS-PLAN, is an innovative new paradigm in treating childhood cancer using computers. Partnering with Dell, the NMTRC has been looking at genomics (or precision / personalized medicine) for over 5 years now. PEDS-PLAN is a new trial which opened in September of 2015 bringing all that knowledge and experience into using precision medicine in frontline treatment for neuroblastoma – an approach that’s never been done, and just a few years ago wouldn’t have been possible. If you’re interested to know more, read our article on how we’re beating childhood cancer with computers.

Please, be changed because of this. Recognize the flawed world we live in, and work to help the ones you can. Really work. Recognize the hurt in the world, and recognize the grace that gives us a chance to still be beautiful.

For the past five years, we’ve filled our free time with Because of Ezra, raising what we think is an impressive amount of awareness, and funds for research (more importantly – research with incredible RESULTS). At the end of our first year, we gave $30,000 to research. We kept just $5k in the bank, to operate and grow our organization. That small investment has led to so many more people becoming aware of the need for better treatment, children beating neuroblastoma, so much more knowledge gained, and many families whose stories will be different than ours. Today, we have given over $700,000 to patient-affecting childhood cancer research. We are beyond thrilled to see what happens as we continue to grow.

We can only succeed because of the powerful and passionate group surrounding us. It is important, of course, our work raising awareness and funds. But the story-changing, cancer beating research we and other advocacy groups help to fund is being done by over 25 hospitals, along with scores of physicians, scientists, researchers, technicians, administrators, nurses, and many others. We work closely with the NMTRC, chaired by Dr Giselle Sholler. We spend time with many families beating cancer today, and many who have lost children. We listen to how each and every treatment is working, and how it is affecting kids’ lives. We tell the stories, and we participate in the global conversation of how to move treatment forward, from perspectives of basic science all the way to federal and international policy.

We’re just getting started. Thank you for all your support to this point, and I look forward to continuing to be a growing fist in the face of childhood cancer. Join us.

Kyle Matthews, Ezra’s dad

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