Beating Nb

In 2010, I founded Beat NB so there would be a consistent platform for all of you to support our mission to dramatically impact survival rates for children with neuroblastoma. I took this step out of necessity, because I wanted to fund treatments that could save my son – and every kid just like him – who had been told “there is nothing more we can do”.

Six years later, and we have raised and donated millions of dollars to research and clinical trials.

We have taken part in the creation of a national consortium of children’s hospitals to help kids all across the US. And we have all watched as my son continues to live his life, thanks to your support.

When I founded this organization my hope may have seemed indefensible to some, but as we stand here today so much more has been achieved than even I could have hoped for. For my son, and for every child on this planet with neuroblastoma – or about to be diagnosed with this deadly cancer.

And as I look at all that has been accomplished, I look ahead with even bigger dreams. Dreams for the day that we not only cure all of these children, but we do so without all of the devastating effects from the current ineffective and barbaric treatments we force these infants and toddlers to endure. And the need to achieve this goal, knowing that today is not soon enough, necessitates another bold step. I am proud to say that today is a new day for Beat NB – a day we’ll look back on when this disease comes with the promise of a cure, as an important step in helping to make that a reality.

It is my honor and privilege to introduce you all to my good friend Kyle Matthews, as he takes on the role of Executive Director of Beat NB and fills you in on what we have in store, and how you can help make our dream a reality.

Today, we’re taking a huge step toward beating neuroblastoma. Four neuroblastoma nonprofits are joining together into a single entity, Beat Nb. We have a few other groups joining in the coming months, and hope to continue this model to bring dozens of families fighting neuroblastoma together into one collective fist in the face of neuroblastoma childhood cancer.

There’s a made-up thing called the cancer club, or cancer parents club, which we become members of when our kids are diagnosed. When Ezra was diagnosed, people told me “the neuroblastoma community is close. You’ll get to know many of the parents and groups.” I’d just been told my son had cancer, and thought that was a stupid thing to say. I wanted nothing to do with this community.

But as time went by (and I’ve said this before), I fell terribly in love with the childhood cancer world. We were surrounded by extremes: strength, resilience, tragedy, heartbreak. For years, Robyn and I have been honored to have many incredible friends whose children have also battled, or are battling neuroblastoma.

Over the past several months, we’ve been working behind the scenes to bring many of us even closer together. Here’s a common story (and, my own). A son or daughter is diagnosed with cancer, and the family builds a nonprofit to make a difference for the next family. There are many groups like this, built on passion, experience, and hope. We’re all doing the same work, in different cities, waving the same flag with different names. And while our individual voices are loud, as cheesy as this sounds… united we will be inescapable.

So we are coming together. Today, Because of Ezra (Tampa), Beat NB (Boston), Melina’s White Light (Buffalo), and Max’s Ring of Fire (San Diego) are forming a new Beat Nb. We will be a united entity, and other groups are joining soon. I will remain Executive Director, and our current Associate Director Noelle Muniz will retain her position, too. Pat Lacey will keep his role as President of the Board. We are, today, one of the largest neuroblastoma-focused nonprofits.

There’s a piece of me that feels the sting of not using Ezra’s name in this new group, but for Robyn and I, what we’re doing now isn’t for Ezra. We cherish talking about and remembering Ezra, and knowing the ripples from his life continue to change other people’s lives. But we’ve always recognized, what we’re doing now is for families who are where we were the day they told us Ezra had cancer. That day, I jumped in the car and drove home to pack a couple bags, since we’d “be here for a while.” My body shook and I screamed at the sky, my face soaked with burning tears, the entire way home. Thirteen months later, the early morning Ezra died, I cried less. Tears are a part of my life now, but that night I was empty and shocked. That is why we do this – so no parent ever has to know that feeling because of neuroblastoma. We were called Because of Ezra, but we were always Because of _____.

And that sentiment is behind our Because of _____ program. We are changing the neuroblastoma treatment paradigm. The work we’re funding is in over 25 hospitals and universities across the country, and more internationally. The NMTRC, our partner research group, has shown “unprecedented” results with their clinical trials, and we are motivated knowing the story IS changing. The Because of _____ program invites other families to join us as well. We need you. Like I said, we are loud with one voice, or with 5, but with 50 families? Neuroblastoma will be beaten. If you founded a neuroblastoma nonprofit focusing on research, and are interested in joining us, I’d love to talk. Actually, I’d love to talk either way. The neuroblastoma community is close.

It’s important to me to mention our friends who, like us, have lost their children since Robyn and I entered the childhood cancer world. There are too many to name here. There are pieces of your kids (from a photo on our wall, to a blossom on our nightstand, to a t-shirt hanging in our closet) all over Robyn and I’s life. Our tears and our love are with you.

I wrote a post after Ezra died titled “everything matters.” As I look back on the past years of friendships being built with people like the Riniolos, the Mikulaks, and the Laceys, I see it all being groundwork for what we’re doing today. I say this too often – I hate that we share neuroblastoma. Still, to paraphrase an old quote, “give me a dozen passionate families and I’ll change the world.” We will beat neuroblastoma. It won’t be fast enough, and the stakes are too high. But we will build a time where every diagnosis comes with a promise that we can beat this.

If you’d like to know more, we’re pretty open about how we operate and what we’re up to. Please, send us a message. And as always, thanks to everyone who supports our work. It’s making a difference.

We will Beat Nb.