How We are Working to Cure Neuroblastoma

As a non-profit, we get a lot of questions. Everything from “why do you do what you do?” to “why should I give to you?” to “can neuroblastoma really even be cured?” We spend a lot of time sharing who, why, and what we are, and thought it’d be good to share some of the points which come up often.

If you’re reading this – you probably have already connected with us enough to know why Because of Ezra exists. You can read a good long-form summary of Ezra’s story on our “Why We Are” page, but the shortest version is this: our firstborn son Ezra was diagnosed with neuroblastoma cancer when he was 13 months old, and died of it when he was exactly 800 days old. There are thousands of kids still fighting neuroblastoma; you can see some of them on our 800days.org page.

Neuroblastoma numbers are scary: ~40% survival rate for a stage 4 diagnosis, 50% of those survivors relapse, and there is no known cure for relapsed neuroblastoma. It’s very similar to the numbers leukemia had 50 years ago, and huge fundraising and awareness campaigns have spearheaded research which brought leukemia cure rates to over 90% now. One child dies every 16 hours from neuroblastoma.

We discovered there was a huge lack of federal funding for pediatric cancer research, of which only a fraction benefitted neuroblastoma research. PAC2 has a great post on some of the numbers – 1% of the American Cancer Society dollars go to (all) childhood cancer research, 2% of the Leukemia Lymphoma Society dollars, and 3.5-4% of the National Cancer Institute’s dollars. Private industry dollars into childhood cancer research are effectively zero – there’s no profit in it. Nearly 1.5 million adults are diagnosed with cancer annually, but only 12-15,000 children are. Thus there’s no market for the drugs, which means no incentive for drug companies to spend R&D on them. A recent study by the William Guy Forbeck Research Foundation suggested a staggering HALF of the money going into neuroblastoma research is from parent-founded neuroblastoma-specific charities.

While we believe charities which focus on quality of life during treatment have huge merit, and made a big difference in OUR lives as we went through treatment, we decided to focus Because of Ezra on two main things – research and awareness. Like many neuroblastoma parents, we’d never even heard the word neuroblastoma when Ezra was diagnosed, even though it’s the most common cancer in infants. Spreading awareness lets people know there is a need – which leads to more research funding, which leads to a cure.

Our main focus is research – with a goal of raising money to support relevant research and clinical trials with physicians and researchers who can help make a difference in survival today. Like we mention on our “How We Are” page, we are committed to knowing the worldwide state of neuroblastoma research, and specifically funding patient-affecting trials and research. Over 90% of our proceeds go directly to research – and we have no paid staff.

As parents who have been through neuroblastoma, we were given a crash course in all things “nb”, as the cancer is often referred to. We quickly surrounded ourselves with resources and experts, learning the terms, needs, and signs. When a child relapses with neuroblastoma – many hospitals literally tell you to pick a trial. There is no protocol. No known cure. No treatment options other than the various trials out there attempting to cure neuroblastoma – or prolong life until a cure is found. After 13 months of treatment, and now years from when we lost Ezra, we still read the publications of new research, and maintain relationships with most of the key researchers and scientists in the neuroblastoma landscape.

We attend different annual neuroblastoma conferences, and communicate with other non-profits as well as researchers to ensure we’re always at the forefront of the battle to cure this cancer. We have near daily contact with other parents fighting neuroblastoma today, providing support, a shoulder to lean on, and an ear to listen to the all-too-familiar stories. Many of these families have children on the trials we are helping to fund – and these trials ARE making huge strides in both the quality and length of children’s lives fighting neuroblastoma. Just listen to Jessica Hester talk about her daughter Brooke’s treatment.

Because of Ezra has a team of incredible people on board who help us work toward our goal of curing neuroblastoma. Derek Pupello is the CEO of the Foundation for Orthopaedic Research and Education (FORE), which provides patients with world-class orthopaedic care through research and education. Marissa Devins-Rice is a powerhouse in the entertainment industry, with a knack for both spreading awareness and fundraising. Erica Copeland is also well known in Hollywood, with a heart for children and a passion to see a cure for neuroblastoma. Our founder Kyle Matthews comes from a business background, founding successful technology-driven companies. Robyn Matthews, our other founder, is a passionate communicator who maintains relationships with a large number of neuroblastoma families and foundations, staying current on available treatment options and research. Through these members and our solid connections with scientists, researchers, and amazing Auxiliary Board and volunteers, we are committed to doing everything we can to see a cure for neuroblastoma cancer.

Thank you so much for your support – contact us if you’d like to know more.