Brighthouse Networks Enterprise Solutions 2nd Annual Charity Classic brings in $90,000 to support childhood cancer research!

Brightouse Enterprise Solutions and Because of Ezra beating childhood cancer
Craig Cowden of Brighthouse Enterprise presents a check to Robyn Matthews of Because of Ezra
Craig Cowden of Brighthouse Enterprise presents a check to Robyn Matthews of Because of Ezra

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.

Brightouse Enterprise Solutions and Because of Ezra beating childhood cancer

West Pharmaceuticals Donates over $17,000 to help cure Childhood Cancer!


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.

Tampa’s Karaoke for the Kure was “a perfect evening”


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.

2015 LA Karaoke for the Kure Raises $125k for Childhood Cancer Research!


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.


Grab tickets to the Tampa Karaoke for the Kure now.

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.


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


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.

BoE on Fox 13

Posted: May 11, 2015 5:07 PM EDT Updated: May 11, 2015 5:57 PM EDT

the hope is, this pill is stopping Lily-Mae’s cancer from coming back


On Tuesday we watched a scientist tear up at a dinner party.

Around twenty years ago, Dr Andre Bachmann started working with a drug called DFMO in Hawaii. In the early 2000s, he recognized the fact DFMO inhibited something called ODC could make it a good drug to treat neuroblastoma, and started working on that, in a lab.

In 2008, at a conference in San Diego, the father of a boy with neuroblastoma introduced Dr Bachmann to Dr Giselle Sholler of the NMTRC, who was doing some promising work in clinical neuroblastoma research. Less than two years later, in 2010, the first clinical trial of DFMO opened. In 2012 a Phase II opened.

Because of Ezra is helping to fund this trial, and although results cannot be shared of ongoing clinical trials, they are encouraging. Neuroblastoma has such a high rate of relapse, remission is termed “no evidence of disease” because its thought we just can’t detect residual disease. These DFMO trials are hoping to stop relapse.

For Lily-Mae (in the picture with her mom Jude), who is 15 months cancer free now, there is incredible hope. At dinner in Grand Rapids, Michigan on Tuesday, for the first time, Dr Bachmann watched a patient (Lily-Mae) take a DFMO pill, with a sip of water. That simple sip, 20 years in the making, may be helping children to beat neuroblastoma cancer. The hope is, this pill is stopping Lily-Mae’s cancer from coming back.

This is what we’re doing. #thismatters

Support this research at, or monthly via Twitter.

Ezra Matthews

Ezra was diagnosed with stage 4 neuroblastoma on October 4th, 2009 at the age of 13 months.

The day before Ezra’s 2nd birthday the Matthews family discovered he’d relapsed already, less than 4 months out of stem cell transplant. This meant his neuroblastoma was very aggressive, and there was no current cure. They were slated to start a trial using a drug called Nifurtimox, but Ezra’s condition began deteriorating rapidly, and he was unable to qualify for the trial – literally less than an hour before he was about to get the first pill.

On November 8th, at 2:50am, Ezra passed on. The neuroblastoma had kept growing, and although they did one last round of chemo in Orlando, it didn’t stop, and early early on a Monday morning Kyle and Robyn lay in his bed with him and held him as he died. We miss him.

John Gegen

On the 1st of June 2012, life as we knew it ended when our beautiful daughter, Lily-Mae was diagnosed with Stage IV neuroblastoma just 6 weeks after her 4th birthday. Lily-Mae hadn’t been particularly ill, she’d had a pain in her back for about two weeks, but it wasn’t a persistent pain and she went to school & her ballet class as normal. We brought her to the doctor expecting the diagnosis to be a kidney infection. Within two days we were told she had neuroblastoma, two days later, when transferred to our children’s oncology ward in Dublin, we were told that the cancer was stage IV.

Brighthouse Networks Enterprise Solutions 1st ever Charity Classic brings in over $86,000 to support childhood cancer research!

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This past Tuesday was the first ever Charity Classic by Bright House Networks Enterprise Solutions (BHNES), benefitting Because of Ezra – to the tune of $86,000+. It was a beautiful day at Saddlebrook Resort north of Tampa (check out more photos on the Because of Ezra Facebook page), with a dozen companies sponsoring including BHNES and Platinum Sponsor Cisco. The teams played 18 holes, wrapping up just as the sun was going down, then enjoyed a great reception.

We continue to be amazed at the community around us, and are honored and humbled to partner with Bright House Networks Enterprise Solutions. Their leadership, including Chief Network Office and SVP Craig Cowden, were warm and caring throughout the planning process and the event itself. You could tell this was a personal connection for them – a refreshing realization and one we’re grateful for! From our first phone call with BHNES, we knew they were connected to our mission of curing childhood cancer. Because of Ezra is proud to work toward a cure with BHNES.


Golfers from across the country flew in to participate, and we heard feedback from many of them it was one of the best tournaments they’d been to. BHNES puts on a classy event (big thanks to Brian and Sherrin as well for their long hours and expertise!), from the t-shirts and golf jackets to the Callaway golf bag prizes to the shish-ka-bob stations between holes.


We’re grateful to all the sponsoring companies for their support, and of course to BHNES as well. We left with many more people having heard of Because of Ezra, and over $86,000 which will directly affect children going through cancer treatment today.

From all of us at Because of Ezra, and kids like Lily-Mae,

Thank you.