Blog

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

10514345_769156579800724_5683097801215706213_o

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 becauseofezra.org/give, 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!

Processed with VSCOcam with f2 preset

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.

10168109_738877356161980_6261460172372225239_n

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.

FullSizeRender-2

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.

photo

Karaoke for the Kure in Vegas – a ton of fun!

2014 was our first year in Las Vegas for Karaoke for the Kure! We had a blast throughout the evening, with 150 people in attendance and some amazing singers and supporters enjoying the perfect weather.

Founders and friends!

Founders and friends!

As our first outdoors Karaoke for the Kure event, Container Park (located in the Downtown Project, brainchild of Zappo’s CEO Tony Hsieh) was incredible. Their team contributed to a beautiful setup, and the space itself was really cool. An entire shopping area built from shipping containers!

Karaoke for the Kure is a fun event every year, but we had a host of performers and entertainers show up this year who really rocked the stage. Ray Toro, formerly of My Chemical Romance and working on a solo project, brought his whole family out (thanks, and great meeting you!) to the event. He even jumped on stage to perform a My Chemical Romance song with a young fan, and another with a not-quite-as-young fan, our friend Ryan from Denver.

Las Vegas headliner Frankie Moreno showed off his harmonica chops, and we had a great duet from felix and Kjay Cavali.

2014-09-27-19.49.34

Our host for the evening, Jeff Civillico, was excited and energetic, speaking passionately about Because of Ezra, and yes – enjoying the karaoke.

Childhood cancer is serious, and needs our attention. We throw these events as fun ways to come together around something horrible which we can stop. After losing Ezra, we will continue to do whatever we can to change our story for the next family.

Every day, children are being diagnosed with cancer. The research we’re funding through your support is helping kids live longer today, and giving families hope. It matters. Thank you so much to everyone who came out to support Because of Ezra in our first year in Vegas. We’re looking forward to being back next year, and making an even bigger impact for children fighting cancer today and tomorrow.

1957672_719244418125274_913906826399251457_o

Karaoke for the Kure Raises Over $60k in Tampa

We stopped by the Orpheum today to grab some of the things we left from last night’s third annual Karaoke for the Kure: Solid Gold, and their crew were setting up for a concert. The floors and walls were still covered in gold glitter.

-KFTC2014-115

Around 350 of our incredible Tampa supporters showed up yesterday decked in gold to celebrate Ezra’s life (Karaoke for the Kure is always held close to his August 31st birthday), honor incredible kids fighting cancer today and in the past, and help us fund childhood cancer research. The place was dashingly gold, representing the color for Childhood Cancer Awareness Month, which is September.

You couldn’t even get in the door without passing our friend Bobby in a full body gold suit, giving out glitter bombs. What’s a glitter bomb? For $10 he’d cover you or a friend in gold glitter. Judging from the pictures everyone posted this morning, glitter bombs were a hit!

Gold bracelets and the sound of Seattle natives Rockaraoke filled the packed house as our host, HOT 101.5’s Jayde Donovan, proved her passion for both finding a cure for neuroblastoma and delivering a near-flawless rendition of Snoop Dogg’s “Gin and Juice.” We craft Karaoke for the Kure with Ezra’s personality in mind; he danced every day, and loved making friends and singing. There’s really no way to sum up just how much fun “live band karaoke” is until you experience it.

-KFTC2014-160

-KFTC2014-95

Yes, childhood cancer is a tough truth to talk about, but we have a good time kicking it to the curb. We smile and laugh just as deeply as we cry. When you meet the families we’ve met, and see children fighting cancer, you know how serious this is. Our friends Dell and Laura Spiva shared about their son Tanner, his diagnosis of neuroblastoma, and how connecting with Dr Giselle Sholler changed their son’s life. He’s been in remission for two years now.

Dr Sholler, who chairs the NMTRC (one of the research organizations we fund), was just one of many pediatric oncologists in the crowd, and she spoke of the powerful research they’ve been doing, which Because of Ezra and you are helping to fund. The results are honestly astounding. Although more than half of kids with neuroblastoma relapse, in the past two years not a single child at her home hospital in Grand Rapids has relapsed. This is working.

Before Dr Sholler spoke, we debuted our latest video detailing just why we do this, and how much your support is needed. Watch it below, and please share!

Our great friend Jesse Miller deserves a bigger thank you than will fit on this page for the work she put in, as well as Lindsay Tracy. You two ladies were instrumental in Karaoke for the Kure working. And of course, to all our volunteers keeping things running smoothly while the rest of us enjoyed the night – THANK YOU. Our decorations crew led by Djenee and Lauren made the place look #SOLIDGOLD. We are so grateful to all of you!

With your help, we raised over $60,000 last night. We can’t wait for next year, and for Karaoke for the Kure in Vegas just two weeks from today. We were humbled and honored to see Tampa really show up this year, with some truly amazing volunteers, attendees, and organizations supporting childhood cancer research.

Deliver Media and Laser Spine Institute brought nearly 30 people EACH from their teams! We also want to thank Senator John Legg and his wife Suzanne for coming by, and for believing so strongly in this need. Both the Rays and the Lightning wowed us (owner for a day?!?!?!? Congrats, Brenda!), and Brighthouse Enterprise Solutions and Grow Financial have both made impressive commitments to childhood cancer outside Karaoke for the Kure.  Fly Bar and Hill Ward Henderson have supported huge two years in a row now, and Florida Blue have been some of the most caring people we’ve met. Seeing Ezra’s face on billboards around Tampa thanks to Clear Channel Outdoor meant so much to us. To all our sponsors – your support strengthens our resolve and gives hope to families fighting childhood cancer today. Thank you.

thank-you-sponsors

To everyone who made it out last night, and to all those who were missed – thank you. Thank you for being a part of Because of Ezra. We do this for so many more kids than Ezra, kids whose lives really do depend on this work, and we simply could never do it alone. We need you, you are our village, and we love you all so much for being on our team. This matters. See you soon!

Ray Toro will Rock with You to Cure Childhood Cancer

ray-toro-close-up--large-msg-116494353969

We’re excited to announce Ray Toro (lead guitar player and co-founder of My Chemical Romance until their split in 2013) will be joining us at Karaoke for the Kure in Las Vegas! He’s taking a break from recording his solo album to jam with you and support childhood cancer research through Because of Ezra.

By coming to Karaoke for the Kure in Vegas, you’re getting a once-in-a-lifetime chance to rock with Ray Toro. We’re raffling off the experience of singing a My Chemical Romance song with Ray backing you up! We’ll have MCR hits “I’m Not OK” and “Teenagers” in the roster. We’ll also have two MCR prize packs of a Ray Toro signed t-shirt, CD, and vinyl.

It’s $10 per entry into the raffle. We’ll be randomly selecting 3 winners – two prize pack winners, and one grand prize of rocking with Ray at the event! Grab as many entries as you’d like in the registration form at becauseofezra.org/vegas. Purchase of a Karaoke for the Kure ticket is required. We’ll see you on the 27th in Vegas!

Children just like Ezra are diagnosed with neuroblastoma and other solid-mass pediatric cancers every day. Because of Ezra seeks to fill some of the large gaps in pediatric cancer research funding and focus on these solid-mass cancers. Our goal is to raise money to support relevant research and clinical trials with physicians and researchers who can help make a difference in survival today. A huge thank you to Ray Toro for his generous support!