Stacie Schaible with WFLA News Channel 8 in Tampa Bay sat down with the Matthews family to share some of Because of Ezra’s story of battling neuroblastoma.
A week ago, we hung out at All Children’s Hospital in St Pete to see 3 year old Sofia Anderson ring the oncology floor bell. All Children’s does this every time a kid finishes upfront cancer treatment, and Friday marked the end of over a year of treatment for Sofia – she’s cancer free!
One of the main things Because of Ezra is focusing our research funding on is stopping neuroblastoma relapse. Historically, over half of kids who beat neuroblastoma relapse – but through the work of the NMTRC, a 25+ hospital national research consortium we work closely with, we’re changing that story. Sofia’s next step is getting on the DFMO trial we’re helping to fund, which we hope is stopping relapse. Results of the DFMO trials which have already been completed are hugely promising, and we’re thrilled Sofia will be able to get on this trial at the same hospital Ezra was treated at 6 years ago, All Children’s Hospital.
We’ve become good friends with Catalina and Patrick Anderson, Sofia’s parents, and Cat has joined Because of Ezra as the founding member of our Parent Advisory Board. Hanging out with their son Aiden and Sofia is always a good time. Plus, our five year old Charley may have a small crush on Sofia. The Andersons have also helped us launch our Because of _____ program, raising awareness and fundraising Because of Sofia. They’re a force to be reckoned with against neuroblastoma, and we’re so grateful to be beating up this stupid cancer with them.
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
Brighthouse Networks Enterprise Solutions and Because of Ezra, partnering to cure childhood cancer
Brighthouse Networks Enterprise Solutions (BHNES) chose Because of Ezra as the beneficiary for their 2nd annual Charity Classic golf tournament. We spent the day at the beautiful Saddlebrook Resort in Wesley Chapel, FL. Yesterday, Brighthouse Networks Enterprise Solutions presented Because of Ezra with a check for $90,000! This money goes straight to childhood cancer research. We are so incredibly grateful.
BHNES have been incredible supporters of Because of Ezra – yesterday’s event marked over $170,000 they’ve raised toward beating childhood cancer with us. Between BHNES and their incredible patrons – the many sponsors of the event, we’ve been humbled at the support. BHNES have connected with the research we are doing with the NMTRC, and our cause in a deep way, and know our story and mission well. It is an honor to be partnered with a group who delves into our workings and sees the promise this research is showing.
Over 100 golfers came and the feedback was the same as last year – many golfers said this was one of the best tournaments they’ve ever been to. Sherrin Smyers of Eventrics did a brilliant job of event planning. We owe huge thanks to Craig Cowden, Brian Zelenka, and the entire team at Brighthouse Networks Enterprise Solutions. These are caring professionals.
As I’m writing this, I’m in a conference room with a dozen doctors, parent advocates, and medical professionals discussing one of the most promising trials we’re helping to fund. The results are groundbreaking, and this room is full of people who are truly bringing hope to families who are fighting neuroblastoma today, and those who will tomorrow.
Brighthouse Networks Enterprise Solutions, and all our supporters, are making this possible. We can’t say enough how deeply thankful we are. It takes all of us. Thank you.
We were honored to receive a $17,710.75 check from West Pharmaceuticals last week as the result of their West Without Borders campaign for the Clearwater location in 2015. I regret we didn’t get a photo of the rest of the room above – over 130 employees for months raised funds and awareness, coming together to greatly support or mission of finding and funding a cure for neuroblastoma and other childhood cancers. Amazing!
Earlier this year, we spoke to the team at West, sharing stories of the children being affected by the research Because of Ezra is helping to fund, and sharing our own story. Seeing so many caring and compassionate people was wonderful – the West team takes their commitment to heart. Thanks to Debbie and Holly for making our visits great (and for showing Charley around!).
West Pharmaceuticals over the past 10 years has raised over $2.5m dollars for a variety of charities located around the globe through West without Borders and other campaigns. Because of Ezra is grateful to the West team (especially our sister-in-law, Nicole Matthews, pictured above!) for their effort and support.
Wow. More than one person came up to Robyn or I last night and said “this is a perfect evening.” We felt the same, and couldn’t be more grateful for all of your support, and for showing up at The Orpheum last night for 2015’s Karaoke for the Kure in Tampa.
We’re still tallying up the official numbers, but we raised over $94,000 – our best Karaoke for the Kure in Tampa yet. That money benefits childhood cancer research; last night we had 7 families in attendance who have fought or are fighting childhood cancer, many of whom are being touched by the research we’re helping to fund. One of those people, Lindsay Matway, whose brother David died of neuroblastoma when she was young (Ezra’s middle name was David), stunned us with an incredibly generous $25,000 check halfway through the night.
Nearly 300 people showed up last night, and the live-band karaoke was in full effect all night long, with 30 minutes of speaking in there. People were crying “plant!” all night thinking, seriously, these can’t be amateurs jumping on this stage! We had everything from the Backstreet Boys to Sam Smith, from Fugees to staples like Bon Jovi.
We were honored to have Dr Giselle Sholler fly out from Grand Rapids just for the night (her plane landed 15 minutes before the event started!), and share some of the research that is being done, and how not one child had relapsed from neuroblastoma in the three years she’s been at Helen DeVos Children’s hospital (typically 40-50% of high-risk nb children relapse).
Robyn and I left the venue just before midnight, with huge smiles on our faces and warm feelings in our hearts, feeling your support and knowing this is making a difference. There were so many of you who had beautiful things to say to us, and who we can’t wait to share some time with soon to catch up. Thank you all, and let’s keep beating this.
Robyn asked Kyle to sing Coldplay's "Fix You"
As with every year, we owe so many thank yous. This event, and everything we do at Because of Ezra, doesn’t work without being surrounded by amazing people.
- Noelle Muniz, our newly hired Assistant Director, has connected to the world of childhood cancer with such passion, and we’ve been blessed to have her join our team. She’s to blame for the event running so smoothly and looking so great last night, and we’re looking forward to having her around for years.
- All our volunteers who showed up to run the registration, take donations, and overall make things run well. Callie, Charlene, Christina, Jhanavi, Joe, Julie, Laney, Leah, Lindsay, Michael, and Philip – THANK YOU.
- Lindsay Tracy helped get all those great silent auction items, and is all around a great friend. Her sister-in-law Mande Tracy also deserves thanks for hanging at our house with our 5 year old, Charley!
- Mary and Xuan from Anise Global Gastrobar in downtown Tampa have been incredibly supportive this year, and brought great food last night. Xuan has agreed to have a seasonal drink on their menu year-round, with $1 from every sale benefiting Because of Ezra. They’re great.
- FOX 13’s Charley Belcher, our emcee for the evening, is personally connected to childhood cancer. His daughter Lindsay beat leukemia, and Charley looked overcome with joy to be embarrassing her by bringing her on stage. One of our good friends who basically throws events for a living said “he was the perfect MC.”
- Dr Giselle Sholler, the chair of the NMTRC, is one of the most inspiring people we know, and the research she’s spearheading at over 25 hospitals across the world is directly changing kids’ survival. She flew in just for the event last night, and spoke about the work the NMTRC is doing.
- Jerry Dufrain from The Orpheum is a gentleman, and such a great host, two years in a row now. We’ve never had any issues with the venue because of his easy-going demeanor and big support for Because of Ezra.
- We were honored to have many families present who have battled or are battling childhood cancer. Thank you for letting us be a small part of your story, Spivas, Lucas’, Andersons, Pattersons, Belchers, and Matways.
- Our sponsors give financially to help make the event happen, and deserve huge ups. Check marks are repeat sponsors! Thank you to the Tampa Bay Lightning√, Deliver Media√, the Tampa Bay Rays√, Laicos√, Fly Bar & Restaurant√, Florida Blue√, Clear Channel Outdoor√, Grow Financial√, the Spiva Family√, Hivelocity√, Hill Ward Henderson√, Cigar City Brewing, EWI Construction, Muniz and Associates, the Tampa Bay Times and tbt, Shook Hardy & Bacon, five labs√, Laser Spine Institute√, Ascent Wines√, TECO Energy, John and Suzanne Legg√, and Rogers Towers.
Because of Ezra
It was a tough interview for me to get through...but it is such an important message. We have to talk through the tears to continue to get people to listen. September is Childhood Cancer Awareness Month, and Lee Roy Selmon's restaurants are donating money from lemonade and take-out wing sales to Because of Ezra. I met Ezra's wonderful parents this morning. You can see part of the interview here. For the entire segment and more information...just click on this link: http://www.fox13news.com/good-day/charley-s-world/18505856-storyPosted by FOX 13's Charley Belcher on Thursday, September 10, 2015
Charley Belcher stops by Lee Roy Selmon’s to celebrate the return of football season, and more importantly, an initiative taking place in support of Childhood Cancer Awareness Month.
Along with Glory Days Grill, all Selmon’s restaurants are teaming up with “Because of Ezra” in an effort to “sack childhood cancer”.
Our third annual (4th? we missed last year in LA, sorry!) Karaoke for the Kure in Los Angeles was last Monday. This year we rocked the Troubadour in West Hollywood, and had a blast raising funds toward childhood cancer research.
Over 400 of you showed up to listen to East Coast Band, croon karaoke tunes with our friends from Rockaraoke backing you up, enjoying the In N’ Out burger truck, the company, and the open bar. With your support and our super cool sponsors, we raised over $125,000.
We were grateful to Andrew Santino for hosting a wonderful night, and for United Talent Agency, our Promoter sponsor.
We had an amazing crew behind the event making things work who all deserve big thanks: Abby Glusker, Noelle Muniz, Marissa Devins, Erica Copeland, Kosha Shah, Matt Rice, and so many more who have continued to be committed to helping us beat kids’ cancer.
Year after year, we remember Ezra while meeting so many new families who are affected by childhood cancer. We continue to push harder toward a cure, teaming up with an ever-growing group to demolish childhood cancer. Standing on the stage this past week, once again seeing hundreds of people commit to this same cause by spending your evening with us… it makes me catch my breath. We will beat this.
We’re gearing up for September now – Childhood Cancer Awareness Month, with our Tampa Karaoke for the Kure September 26th, and some cool things we’ve got planned which we’ll share soon.
Thank you for standing with us against childhood cancer. Thanks for remembering Ezra while raising hope for kids who are fighting cancer today. We’ll say it over and over again – this matters.
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.
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.