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. #thismattersRead more
Brighthouse Networks Enterprise Solutions 1st ever Charity Classic brings in over $86,000 to support childhood cancer research!
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.Read more
We received this email the other day, and were moved to tears (good ones!) by it. Thanks, Meshelle, for letting Ezra’s story be a part of yours. It means so much.
“Honestly, I can’t remember how I heard about Ezra’s story, but I can tell you exactly where I was… that is forever engraved into my consciousness. I was at home and about five weeks into my maternity leave after delivering my second child. There was a rare moment of silence where both, our oldest 18 month old and our newest member, were both napping away. I remember opening the website and seeing a blog simply titled ‘Relapse.’ It was August 30, 2010. I often describe that day as the day that Pandora’s box was opened, learning things that I could never forget and finding a depth of sadness that I didn’t know existed. It was the day where I was overcome by a tornado of opposing feelings, one side knew the extreme peace and happiness that comes with bringing a new child into this world, and the other side was overcome with sadness and anger that there was something dangerous that was silently stealing children from their families. I have two children, how did I not know about the world of childhood cancer? I spent all day catching up on Ezra’s story. I allowed your words to pierce the perfect little bubble that I lived in, and I allowed myself to feel sadness for you… soon enough that sadness turned into anger and outrage. It just didn’t make sense to me how so many kids were affected by cancer and how so few people seemed to know about it.
By the time the November 8th blog post ‘Ezra David Matthews‘ was uploaded I had already returned to work. I sat at my desk and cried for you, for the loss of Ezra, and for the fact that the light of the world was diminished a bit more. My first thoughts were more of a series of questions, each one of them beginning with why; why them? (I didn’t know you at all but you all came across as the most loving people on the planet… and it wasn’t like you hadn’t been through enough.), why Ezra?, why not one of my kids? That last question stopped me cold as the stark realization that it could be one of my children washed over me. There is no rhyme or reason to this. It was not enough for me to be angry, to say this sucks and move on with my life… I had to do something. I had a degree already, but it was in Philosophy, and I’m pretty sure that a cure for neuroblastoma couldn’t be found in Aristotle… so I went back to school. I took an extremely rigorous course load that well prepared me to take the MCAT, which I did and now I’m working on changing the world. Medical School isn’t easy, but I can guarantee it’s a cakewalk compared to fighting cancer. My course of study has led me down the clinical research path.
‘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.’
I was changed because of Ezra. It’s hard not to be changed by something of this magnitude. I get up and go to school because I can. My kids are happy and healthy and my husband is extremely supportive. I am alive, and because of that, because of Ezra, I will work my hardest to make a change in the world of pediatric cancer.
P.S. The picture I sent is of me and my youngest Laila… she was the one I was on maternity leave with when I first read your story.”Read more
Sometimes we get communication from people which is so powerful we just have to share it. A woman named Stephanie sent us the picture above, of her stethoscope for nursing school. It has Because of Ezra engraved on it, as well as a cross and her initials. Stephanie said this in her message to us:
I received my stethoscope in the mail today! I wanted to make sure the engraving was something that meant something important to me. I engraved Because of Ezra on it along with a cross and my initials. This organization pushed me even more to pursue my dream of nursing – specifically in pediatric oncology where I hope to end up in the future. Now everyday I go to nursing school, I will always see the reminder of exactly what I’m working for and the little boy that changed my life and made me who I am! #EzraMatthews #800days #weLOVEweHOPEweFIGHT
Stephanie – we are so proud to know Ezra’s story touched you enough to move you to this career in nursing with an emphasis on pediatric oncology. It’s beautiful to see Ezra’s story (and so many of the other kids fighting neuroblastoma) affecting lives and change like this.
Thank you – you’re making a difference.Read more
Tampa runners, joggers, lovers of the pavement, and haters of cancer – come run the Gasparilla Distance Classic with us!
EVERYONE can do this – runs range from a 5K jog, strollers jog, or run… all the way up to a half marathon. We’re doing it a little different this year – check the link below to create your own fundraising page (it’s super easy – just press the big green “Become a Fundraiser” button)!
All funds raised benefit Because of Ezra to support our mission of funding relevant research into a cure for neuroblastoma, the most common form of pediatric cancer. $50 or more raised gets you one of our awesome t-shirts – $750 or more raised gets you a pair of custom Nike running shoes in BoE colors!
Come on out and run with us – we’d love to see the most runners ever this year! If you can’t make it, please share the event so your runner / walker / stroller friends can come out. If you can’t make it, you can also donate toward someone running by pressing the Donate button below.
Sign up at http://stayclassy.org/gasparilla.Read more
(Holy edits, Batman! We’ve changed #nomorenb to something a little more recognizable – #800days. The project is still around, but can be found on 800days.org now! 10/30/12)
Today marked the release of the #nomorenb project – you can check out the site at nomorenb.org.
#nomorenb is a Because of Ezra project dedicated to telling the stories of children with neuroblastoma, and raising funds towards a cure. We’re hoping to share these kids’ stories with the world – there is a real need which not enough people know about. It’s time more people heard about this cancer – we need more attention on the issue, more hands in the battle, and more funds to pay for research and clinical trials.
Neuroblastoma is the most common cancer in infants. Over 600 children a year are diagnosed in the US alone with neuroblastoma – and one will die every 16 hours. Over 70% of children diagnosed are at stage 4 – which has a less than 30% chance of survival. There is currently no cure for relapsed neuroblastoma.
We were so excited to have Caden Shrauger as our first kid featured in the #nomorenb project. The Shraugers are a fun family (check out their team-fc.com site) who are a blast to spend an afternoon with, and are currently living in their camper in the parking lot of the Seattle Children’s Hospital, where Caden has been getting treatment for months. Caden was a happy kid bouncing around, full of high-fives.
A large thanks to the guys in Hey Marseilles as well for coming out and playing for Caden – he even left with some drum sticks!Read more
Whoa – what a cool thing! When we went to the 2012 NMTRC Symposium in May, we met a cool couple named Mike and Kezia Fitzgerald. Their daughter, a little girl just as beautiful as her name – Saoirse – was taken from them in December of 2011. She had stage 4 neuroblastoma, just like Ezra did. Like us, they started a foundation to continue their child’s fight – the Fitzgerald Cancer Fund. This morning, they and many of their supporters flooded the Today Show plaza, with a big banner for their cause, and pictures of Saoirse, Ezra, and many of our other friends’ children who are battling or have battled neuroblastoma. Al Roker and Ann Curry both came out and spoke to them – Al on camera! Check out the photo above to see them on the show. Great job Mike and Kezia! I am sure Saoirse is smiling – and Ezra with her.
Here’s this week’s links – what’s going on in neuroblastoma.
Kids – Why We Fight
Although Adam has been battling nb for years – he was diagnosed at 5 and is now 8 – we just came across his blog this week. We thought we’d introduce you all! Adam’s Appeal
Hans, diagnosed at age 3 with neuroblastoma, has been fighting for almost 6 years now. He’s a cool kid it seems – he’s even got his own grill. Check out his site, and get to know Hans. Hans Weberling
3 yr old Oscar Knox has been fighting neuroblastoma since November of 2011. His folks just set up a Twitter for him (@Wee_Oscar) which already has over 3000 followers! Give them a follow and say hey. bbc.co.uk
Non-Profits / Events / News
Pc Mark Edwards, a British policeman of over 26 years, received an MBE (Member of the Most Excellent Order of the British Empire) for raising nearly £500,000 for the Joining Against Cancer in Kids (J-A-C-K) charity, which helps children suffering neuroblastoma. Way to go Mark! Horncastle News
Johnny Losurdo has been no evidence of disease from neuroblastoma since he was 5. Now 16, he’s released a single (Fearless) under the name “Johnny L” to raise awareness of pediatric cancer. Sales benefit CNCF, a neuroblastoma non-profit. You can grab the song in iTunes, or at CDBaby.com! Horncastle News
If you’re from Tampa, you’ve probably heard of Gaspar’s Grotto. It’s in Ybor, and Tampa Bay’s channel 10 says they have the best Cuban in town.
The folks over there are teaming up with Because of Ezra and Riders of Grace for a fundraiser lunch!
On Saturday, April 28th, from 1pm-4pm, come on down to Gaspar’s Grotto to lunch with us and the Riders of Grace motorcycle charter. Our 2nd annual Because of Ezra Benefit Ride is May 19th, and this lunch will be a partner event for the ride – we’ll hang out, eat, drink, and chat for a nice Saturday afternoon.
Tickets are $25/person, and must be pre-ordered. For the Gaspars Grotto menu you’ll be able to choose from, click here (pdf). This includes a meal AND a drink (and yes, that includes beer/wine/well also). We’ll have our own blocked off area, and there’ll be live music as well!
We’d love to see you guys all out there to enjoy a good meal, a great Saturday, and friends. And don’t forget to tell your friends they’re all invited!
REMEMBER – you MUST buy tickets BEFORE the event. Here’s the link: http://becauseofezra.org/shop/gaspars-grotto-lunch-ticket/Read more
One of the founders of Because of Ezra, Ezra’s dad Kyle Matthews, owns a website called ModMyi.com which is a thriving community of Apple enthusiasts. Over 800,000 members are registered on the site, which provides customizations for your iPhone, iPad, iPod Touch, and other Apple devices. One of the popular things folks do there is theme their iDevice. You can get custom icons, lockscreens, icons, apps, and more all by jailbreaking (free and 100% legal) your device. Now there’s a theme to benefit Because of Ezra!Read more