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.

Patrick Lacey


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.

Kyle Matthews

Max Mikulak


Melina Riniolo

Melina Riniolo

Ezra Matthews

Ezra Matthews

Will Lacey

Will Lacey


Is this Beat Nb still a 501(c)(3) nonprofit?

Yes, Beat Nb is a 501(c)(3) nonprofit organization.  Our federal EIN # is 27-2314549.

Why did you decide to be called “Beat Nb” instead of keeping “Because of Ezra” or "Melina's White Light" or "Max's Ring of Fire?"?

We feel the name Beat Nb (beat neuroblastoma) is more inclusive and speaks directly to our mission.  While it is important to honor each of our kids’ legacies and names, we all share the same goal of beating neuroblastoma.  We will still be sharing the stories of our children, including Max’s, Melina’s, and Ezra’s.

Will you still be funding the same research and clinical trials?

Yes. Beat Nb will continue to work closely with the NMTRC, a research consortium of more than 25 hospitals across the world focused on treating and curing neuroblastoma, chaired by Dr. Giselle Sholler. You can learn more about the specific trials we fund here.

Will anything change with my recurring (monthly/annual) donation?

No. Nothing will change. If you were a recurring supporter of any of these groups, your recurring monthly or annual donation will automatically be transferred to the new Beat Nb entity. You will now receive receipts and annual giving letters from Beat Nb.

What will happen to Because of Ezra’s “Because of _____” program?

The “Because of _____” program is still an active and important program within this new combined Beat Nb organization.  The Because of _____ program was designed as a way for families to tell their child’s story and raise funds for neuroblastoma cancer research without having to start their own charity. Beat Nb provides a fundraising platform for these families through their own web page on our site as well as infrastructure under our 501(c)(3).  To learn more about the Because of _____ program, please visit:

Who is on Beat Nb’s staff and board of directors?

You can see our staff and combined board of directors here.

Will you still have the same special events?

Yes.  We will still have the same special fundraising events in your city including Cure Me, I’m Irish (Boston, Buffalo), The Falmouth Road Race (Boston), Touch a Truck San Diego, Karaoke for the Kure (LA, Tampa, Denver, NYC), Mini Golf Big Cause (Tampa) and more!

If you have further questions, please don’t hesitate to reach out to us at


2015 Yearend Summary: A Letter from Beat Nb Co-Founder, Patrick Lacey


Dear Beat NB Supporters –

Thanks to your extraordinary support over the past calendar year, we were able to send $800,000 to fund research and clinical trials in 2015.

Whether you donated, hosted a fundraising event, sponsored an event, attended “Cure Me I’m Irish,” or ran in the Falmouth Road Race, you contributed to Beat NB’s accomplishments in 2015. Below is a list of updates to summarize the work done this year in the clinical trials consortium (NMTRC), which is just one aspect of the efforts funded by our organization, in addition to all of the ongoing trials that were opened before January 1st, thanks to prior funding.

1. Preventing high-risk NB children from relapsing. This is an area where we feel we can have the most dramatic impact on survival in the short-term. We hope to have phase II clinical trial results published early in the New Year, and the results are very promising.

2. The first ever clinical trial using genomic medicine – along with standard chemotherapy – for newly diagnosed children with high-risk neuroblastoma. This trial was funded by DELL, and is also using DFMO to hopefully prevent any children from relapsing. This is part of the longer-term strategy to, not only increase survival, but to work on decreasing the toxicity of the current standard of care.

3. A new trial was opened for NB kids, combining tolcapone and oxaliplatin for those kids battling relapsed or refractory disease.

4. Six new agents were tested in the lab, with the two most promising agents looking to move into phase I clinical trials in 2016.

5. The consortium has added 8 new sites – thus bringing the treatment closer to more children across the United States.

In addition to my duties with Beat NB, I am honored to continue to serve on the Executive Committee for the consortium, which is funded by your support. In addition to this committee, earlier in 2015 I was also appointed to the role of Executive Advisor to the NMTRC chair. Both roles allow me a unique look into exactly how our funds are being used, and that transparency only further fuels my desire to lead Beat NB to do more.

This work is where the tide will be turned – and your support is making it all possible.

Thank you for all you have made happen and it is with great enthusiasm that I look ahead to making 2016 a year to remember.


Patrick Lacey

Growing the Because of Ezra Team; Noelle Muniz

Noelle Muniz_Business Headshot

We’re excited to welcome Noelle Muniz to the Because of Ezra team as our Assistant Director.

Over the past 4 years, we’ve grown Because of Ezra from a blog community around Ezra’s story to a nationally recognized force against childhood cancer, giving over $400,000 directly to patient-affecting, innovative research. We define patient-affecting as being able to be at trial within 6 months (or being at trial already).

Through this time, we’ve operated BoE as a labor of love, with Robyn and I (Kyle) dedicating hours as we could around our daily lives. We’ve also had some great volunteers (hi Christina!) who add their hands and voices to our work. It’s been motivating, and is rewarding to see Ezra’s name remembered as we bring hope to families for whom we’re helping to change the story.

We’ve realized we’re limiting Because of Ezra by the amount of hours we’re able to put in. We operated with no paid staff for four years – and have hit a ceiling with that model. There’s so much more we want to do, and so much more impact we can have, directly affecting the level of research we’re able to fund, and the level of advocacy and awareness we’re able to affect. With that stewardship-minded attitude, Noelle joins us as our first paid staff member.

Noelle learned of Ezra’s story through a mutual friend, and developed a profound empathy for the families who have lost children to neuroblastoma. Her desire to support those who are currently in the fight shows in her fierce commitment to working with Because of Ezra to help find a cure.

Noelle has extensive experience in public relations, media, marketing, corporate partnerships and community relations.  Prior to joining Because of Ezra, Noelle was a Senior Account Executive at Tucker/Hall, Tampa Bay’s largest PR firm.  There, she led innovative campaigns for a diverse set of clients in the areas of strategic communications, crisis management and public affairs.

Thank you all so much for your continued support. As you can see in this FOX segment from this week (Old drug may bring new hope to young cancer patients), we are truly changing the story for the next families, through your help. Thank you for letting us continue to see Ezra’s name attached in some small part to a cure for neuroblastoma. Let’s keep working.

Old drug may bring new hope to young cancer patients

We first met Sophia Anderson in April 2015. Sophia has an aggressive cancer called neuroblastoma. Today - we have an update to our story but I thought I'd re-post last year's piece so everyone can meet Sophia,her parents, Catalina and Patrick, and brother Aiden and another very special person, Kyle Matthews. He lost his son Ezra to neuroblastoma in 2010. Now Kyle and his wife Robyn are helping fund a clinical trial that we all hope will benefit Sophia and children around the world.

Posted by FOX 13's Dr. Joette Giovinco on Friday, January 15, 2016

Old drug may bring new hope to young cancer patients

ST. PETERSBURG (FOX 13) – For little Sofia Anderson, every moment with big brother Aiden is nothing short of precious. “When she feels great, those are the great days,” said Catalina Anderson, Sofia’s mother. “Every morning, we wake up and thank God we still have her.” This 2-year-old is battling a disease no child should. It’s a cancer called neuroblastoma. “It’s hard, as the father. It’s a helpless feeling,” Patrick Anderson offered. Doctors found tumors near Sofia’s spine, around her eye, and in her bone marrow. Catalina remembers the moment doctors gave her the shocking news that the tumors were malignant. “I just remember dropping down to the ground and just saying it can’t be.” “The beginning, you do the, ‘Woe is me; why?’ You look for answers. But once that passes and you can’t cry any more tears, you say this is our new life, this is our normal and you adapt,” explained Patrick.

Because of Ezra: Bay area couple uses loss to help others


Because of Ezra: Bay area couple uses loss to help others

Posted: Sep 15, 2014 3:03 PM EDT Updated: Oct 13, 2014 4:16 PM EDT

By Stacie Schaible

TAMPA, FL (WFLA) – The loss of a child leaves wounds so deep they never really heal. Robyn Matthews says “you don’t realize how many people ask you how many children you have until your children die and then it’s everyday somebody asking how many children you have.”She and her husband Kyle had their first child, a son named Ezra, in 2008. And for the first year of his life, everything seemed normal. But then Ezra seemed to lose interest in walking. “We went to the pediatrician four times that month and finally we just took him to the emergency room thinking we need more answers than a cold,” says Matthews.

According to Robyn Matthews “right away they did scans and he was diagnosed with a massive tumor in his abdomen and it turned out to be neuroblastoma.” Cancer of the nervous system. The most common cancer in infants and one with an extremely high mortality rate…

Continue reading Because of Ezra: Bay area couple uses loss to help others

Karaoke event to fund pediatric cancer fight

Karaoke event to fund pediatric cancer fight
Karaoke Event to fund pediatric cancer fight
Kathryn Bursch, WTSP 8:59 a.m. EDT September 8, 2014
St. Petersburg, Florida – Sadness for a Tampa couple has turned to song. But their tune is a fight song — a fight against cancer.
For Kyle and Robyn Matthews, both their joy and sorrow spring from their son Ezra. The toddler died just shy of his third birthday after being diagnosed with neuroblastoma, an aggressive form of cancer.
After Ezra’s death, the Matthews formed a charity called Because of Ezra. The group is holding a fundraiser on Sept. 12 called Karaoke for the Kure. Money raised will go toward research, because right now, there are few treatment options for stricken children.
“There’s a lot of great organizations that help life during treatment, but we wanted to focus on research itself,” said Kyle Matthews.
Karaoke for the Kure is being held at The Orpheum in Ybor City and the Matthews guarantee a good time. “We actually fly in a band from Seattle and you get to be up on stage and be a rock star for an evening,” said Kyle.
“It really is a celebration of a good time, for a good reason,” added Robyn.

Continue reading Karaoke event to fund pediatric cancer fight

2014 NMTRC Symposium in Grand Rapids, MI


Each year, the NMTRC (Neuroblastoma & Medulloblastoma Translational Research Consortium – holds a conference discussing the advances made in neuroblastoma research in the past year, and the direction their group is focusing on for the future. This is our 4th year attending (we also wrote about the 2012 and 2013 events).

This year, over 120 physicians, researchers, parents, and non-profit managers gathered in Grand Rapids, Michigan as a powerhouse of focus on curing neuroblastoma. The discussions this year revolve around personalized antibody treatment, sequencing and molecularly guided therapy, and preventing neuroblastoma relapse.

A powerful opening from Jude Sibley began the conference. Her amazing daughter, Lily-Mae, was one of 7 kids in Ireland who will get neuroblastoma each year. Irish hospitals have no clinical trials for neuroblastoma, and when she was diagnosed the doctors told Jude her daughter had 3-5 weeks to live. That was in 2012, and today Lily-Mae is still dancing with her family. Jude and Lily-Mae’s dad Leighton found the DFMO trial being ran by the NMRTC, which has incredibly promising results in preventing relapse, and travel from Ireland to Michigan every 3 months to participate. “Our kids need to get on with the business of living. It is us who worry,” said Jude. With a current 70% chance of relapse after neuroblastoma remission, and no cure for relapse, preventing relapse is a huge win.


The symposium has a wealth of medical minds present from all over the country. Lynne P. Yao, MD, the Associate Director, Office of New Drugs, Pediatric and Maternal Health Staff for the FDA joined us via WebEx, and Greg Reaman, MD, Associate Director of Oncology Sciences with the FDA also spoke, and are excited about what the NMTRC is doing. You can download the full program here (pdf).

Dr Giselle Sholler, chair of the NMTRC, shared results of the DFMO trial Because of Ezra is helping to fund. The results are extremely promising, and will be publicly available soon.

Conferences like the NMTRC Symposium are great for a variety of reasons. As parents of a child who died of neuroblastoma, Robyn and I find a great value in spending time with other parents who’ve shared our experiences in some way. There is a common bond which allows us to laugh and cry easily while talking about our children and cancer. The researchers at the conference are warm and passionate, discussing new ideas and the details of current studies at length both with parents and physicians. Many innovative ideas spring from the conversations held over lunch, dinner, and throughout the day’s presentations.

There’s still another day and a half of the conference left. August Calhoun, the VP/GM of Dell Healthcare and Life Sciences will be talking about Dell’s vision for the future of medicine. Dell has been an amazing supporter of childhood cancer research and the NMTRC as well.

We’re motivated to continue toward a cure for neuroblastoma. The annual growth in this conference, along with other neuroblastoma-focused conferences, is powerful to see, and gives us so much hope. We can beat this, together. Thanks for all your support.

Over $150,000 to Research in 2013


This past weekend we were in Grand Rapids, Michigan filming the story of an incredibly cute Irish neuroblastoma warrior named Lily Mae (look for that soon – and thank you for letting us share your story, Lily Mae and family!). Temperatures were in the single digits, and everyone was freezing.

As I watched Lily Mae dance around, singing her heart out no matter what she was doing, I couldn’t help but think of Ezra. He loved to dance – and I pictured the two of them hanging out by the fireplace she was playing by, or building a snowman together (the snow was so powdery it never would have worked).

Lily Mae and her family fly 3500 miles every few months to be treated by a promising drug called DFMO, which has shown incredible results in preventing neuroblastoma relapse. Neuroblastoma is hard enough to treat up front – and over 60% of kids relapse. There’s no cure for relapse. If we can prevent relapse, so many lives would be saved.


We began funding this DFMO research in 2012, when we gave $100,000 to various research focuses. Through your help in 2013, we were able to fund over $150,000 of research, giving children and families hope today – and better quality of life in treatment. DFMO is a pill which can be dissolved in lemonade, and has no side effects we’ve seen. The results so far have been astounding. This trial completes in 2014, and is being done by the NMTRC, chaired by Dr Giselle Sholler.  We are also supporting NANT, led by Dr Robert Seeger, and are proud to have funded them opening their recent trial location, at Children’s Hospital Colorado.

When you give to Because of Ezra, whether by attending our events, donating online, spreading the word, or however you can help – you are making a difference. Over 90% of our donations go directly into research and awareness. We remember Ezra constantly, and we hold a banner high for each child fighting neuroblastoma today. We spend time with the families who are where we were – in hospitals, clinics, and Ronald McDonald houses across the country and world. With your help, we can change the next family’s story for the better. We can find a cure, and we are so incredibly grateful for your continued support of what we’re doing.

Thank you so much,

Kyle and Robyn Matthews, Derek Pupello, Marissa Devins, and Erica Copeland
Because of Ezra Board of Directors


What’s Going on in Neuroblastoma Research – 2013 NMTRC Symposium

NMTRC Symposium 2013

The NMTRC (Neuroblastoma & Medulloblastoma Translational Research Consortium) is a group of 18 universities and children’s hospitals headquartered in Grand Rapids, MI which offer a nationwide network of childhood cancer clinical trials. The group is chaired by Dr Giselle Sholler. These trials are based on the research from a group of closely collaborating investigators who are linked with laboratory programs developing novel therapies for high-risk neuroblastoma and medulloblastoma.

They’re one of the groups Because of Ezra supports financially under our mission of funding relevant, patient-affecting research into a cure for neuroblastoma. The NMTRC hosts an annual symposium, where the members meet to discuss the previous year’s work and future directions. The 2013 symposium was this past Monday and Tuesday (May 6-7) at the Wyndham hotel in Lake Buena Vista, Orlando, FL. Video will be on YouTube within the next week or two (and we’ll mention when it is), but we wanted to share some of the experiences here first. You can watch the entire conference on YouTube if you’d like, separated by discussion.

The NMTRC is unique in the level of community between the physicians, scientists, and families (both in treatment, out of treatment, and those running foundations). We largely attend the same presentations, dinners, and have structured open conversations about the work being done. The depth of collaboration is refreshing and inspiring. When you have parents whose children are ON a trial participating in the same conversations as the scientists who proposed the trial, the organizations funding it, and the physicians carrying them out… it’s an incredibly effective synergy.

The work being done is truly remarkable – the first ever FDA approved personalized medicine trial for pediatric cancer, preventative trials to reduce the rate of relapse (in this case with a drug called DFMO), immunotherapy, and more. One of the most interesting presentations was by David Krag, MD, who is the SD Ireland Professor of Surgery at the University of Vermont (yes, he said, surgeons do science, too!). Titled Personalized Antibody – Timeline to Clinical Impact, Dr Krag discussed an exciting method of harnessing the body’s own immune system to create personalized antibodies specifically for an individual’s neuroblastoma tumor. It should be going to trial this year.

Personalized medicine is a concept at the core of what the NMTRC is doing. It has the huge benefit of being much less toxic (and much more targeted) than the standard chemotherapy regimens currently prescribed for neuroblastoma. These current standards are not effective (survival rates for stage 4 neuroblastoma hover at 40%, with relapsed neuroblastoma still having no known cure), and include rounds of treatment with what physicians call “kitchen sink chemo.” Partnerships between the NMTRC and the Translational Genomics Research Institue and Dell have pushed forward much of this work by analyzing individual patient’s tumors to find treatment options specific to their disease.


We got to spend some great time with non-profits also working toward a cure for neuroblastoma – and families who are battling it now. Some of the children represented included Will Lacey, Melina Riniolo, Brooke Hester, Saoirse Fitzgerald, Abigail Goss, Daxton Blanford, Chase Ringler – and there were even more. These children are each reasons we fight, and reasons why continuing the battle against neuroblastoma is so very important. Neuroblastoma CAN and WILL be beaten – and it is going to take time, passion, awareness, and funding. We are so, so, so, so grateful to have your support in making this a reality.