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.

Gasparilla Distance Classic 2013 – Nearly $9,000 Raised!

What a great weekend running for Ezra and all his fellow neuroblastoma fighters! This was our third year running the Publix Gasparilla Distance Classic, and it was so good to see everyone out there!

Because of Ezra Gasparilla 2013

A huge thank you to all the runners, walkers, and strollers who came out and ran with us, raising nearly $9,000 to benefit research into a cure for neuroblastoma. You guys were amazing, and we’re so grateful to have you all on our team. A special thanks to our top fundraisers, Dave and Deb Matthews and Abigail Bonham – both with $1,000 or more raised!

Top supporters received a pretty sweet Because of Ezra hoodie, and we’ve got some for sale as well – if you’d like one, shop here!

It was a great day for running – in the 80s but slightly overcast the whole time. We can’t wait to see you all out there again next year, with even more red-shirted BoE supporters fighting pediatric cancer!

(Didn’t get a chance to give, but wanted to? You can still support the run here, or make a normal donation here! THANK YOU!)

Aly + Jaxton Sutton

I Run for Ezra

I Run to Cure Neuroblastoma


Giving Away $100,000 in 2012


Today marks the day we’ve been without Ezra as long as we were with him. 800 days from the day he died, after living exactly 800 days. It’s a strange day for us.

We thought it would be fitting to do Because of Ezra’s giving for 2012 on this day – this is only something we could have done Because of Ezra. So this morning, Robyn and I presented a gift from Because of Ezra in the amount of $75,000 to the neuroblastoma work being done by Dr Giselle Sholler at the Van Andel Institute in Grand Rapids, Michigan. Our gift was matched by an incredibly generous local family trust, meaning the total gift will be $150,000. This is specifically to fund a trial using DFMO, an investigational new drug which prevents relapse of neuroblastoma. We personally know many of the children on this trial, and it’s a drug which has no significant side effects, and so far has been extremely effective. 50% of children who fight neuroblastoma to the point of no evidence of disease relapse – and there is no current cure for relapsed nb. Preventing relapse would be a huge accomplishment. Dr. Giselle Sholler received the gift along with the CEO of the Van Andel Institute, David Van Andel.

We are honored to be able to contribute to work which is making a huge difference in children’s lives who are fighting the disease Ezra died of. In all their names, and from the bottom of Robyn and I’s hearts – thank YOU for supporting what we’re doing Because of Ezra. We couldn’t have done this today without all your support raising awareness and funds. Our board members Marissa Devins, Erica Copeland, and Derek Pupello (and their spouses) all deserve a huge thank you as well – they are incredible people who make doing all this easier, and we are so grateful to have them on board. They are also amazing friends.

Late in December, we also supported the work being done by Dr Robert Seeger and the team at NANT in Los Angeles, with a $25,000 gift. NANT is doing some great work, including a study on the biology of neuroblastoma, and we’re honored to support them as well.

Through your help Because of Ezra was able to give $100,000 in 2012 to researchers, physicians, and scientists making a difference in survival today for children fighting neuroblastoma. Thank you, thank you, thank you.

Robyn mentioned raising awareness and giving toward a cure is a way for her to continue being Ezra’s mother – to keep honoring his name, to keep fighting the fight he started for us. We know the hurt neuroblastoma brings to a family, and to be able to take that away from someone in Ezra’s name has so much meaning for us.

We look forward to doing even more to cure this horrible disease in 2013 – and telling more people about the need, the fight, and the ways to cure this. It is possible, and with people like you helping us, we know we can do this.

Thank you.