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
A history of the NMTRC’s genomic-based treatment for childhood cancer, and a new paradigm for today.
The launch of a new clinical trial called PEDS-PLAN in September of 2015 marks a paradigm shift in childhood cancer treatment and precision medicine — the first time DNA and RNA sequencing are being done in newly diagnosed patients. This article will take a look at the last five years of genomic research in childhood cancer done by the Neuroblastoma Medullablastoma Translational Research Consortium (NMTRC), and what it means for the future of precision medicine.
If you follow the clinical research world, you’ve heard of personalized medicine, or precision medicine, or molecularly guided therapy (MGT), or genomics. They’re different terms for what is generally the same concept — personalizing treatment per patient based on specific genetic or molecular analysis. In childhood cancer, genomics is being used to beat cancer on a kid by kid basis.
Because of Ezra is a non-profit my wife Robyn and I founded in 2011, dedicated to finding and funding a cure for neuroblastoma and other types of childhood cancers. 2016 will be our 6th operating year, after losing our son Ezra to neuroblastoma in 2010. By the end of 2015, we will have given over $700,000 directly to patient-affecting childhood cancer research.
These past 5 years, we’ve been working closely with the NMTRC, an international consortium of 25 hospitals (and growing) conducting clinical trials and research with a shared goal to ours — beating neuroblastoma and other childhood cancers. Much of the NMTRC’s work, in partnership with Dell and TGen, has been in leading genomics research in childhood cancer. (Full disclosure: this author sits on the Executive Board for the NMTRC, and Because of Ezra supports various NMTRC trials financially.)
Some background on genomics: the human genome was first completely mapped in 2003. It took 10 years, and $1 billion. Today, in 2015, TGen can process a patient’s genome in 6 hours. The cost is in the thousands. The sharply dropping costs and speed of genomics have opened a new world of research. There is much work to be done still — we could map the genome in 2003, and now can do so quickly and cost effectively, but what do we do with that data? That is what is being researched worldwide now — across many malady types.
Genomics in cancer is exciting. Cancer kills because a group of cells are mutated, and keep duplicating without stopping. Your body is supposed to maintain a state of equilibrium (called homeostasis) as you go about your life. Cancer cells ignore this, and keep duplicating. The mutations that make cancer cells keep going are what cancer genomics look at. And the goal is to then treat with a drug targeted to that specific mutation — knocking out the tumor with a precise medicine, rather than a blanket chemo hoping to destroy the tumor.
While sequencing can be done at most hospitals today, it is important to understand what depth of sequencing is done for each child, and how this information is being interpreted. The NMTRC’s molecular tumor board has developed significant expertise over the last 5 years in the analysis of the genomic sequencing, to make the most informed clinical decisions for children. This is truly the key to best personalized care, taking into account the previous medical treatments, the current condition of the patient and wishes of the family.
The NMTRC, chaired by Dr Giselle Sholler, first started clinically looking at genomics in childhood cancer with a trial opened in 2010. They’d noticed in treating children with neuroblastoma since 2005, kids all had very different tumor profiles. With genomics starting to be clinically relevant, a trial idea was formed.
Dr Giselle Sholler, Chair of the NMTRC, and one of her patients. Photo credit: Spectrum Health.
The pilot trial (NCT01109238, completed), opened in April 2010, enrolling 5 children to test if it was possible to support “real-time” (quick enough to treat with) treatment decisions through mRNA expression data genome-wide in neuroblastoma biopsies. At the end of that trial, the process was able to be completed in 12 days. This was the first genomic-based personalized medicine childhood cancer trial in neuroblastoma. (Results published here). It’s important to note, the most accurate and deepest data for determining best treatments comes when using both RNA and DNA expression and sequencing. However, in 2010 the tech wasn’t yet able to support doing all of that quickly enough to get “real-time” data for making treatment decisions. But RNA expression could be done quick enough, so it was time for a new trial, one actually treating kids.
The following year, in 2011, a Phase I trial (NMTRC 001, NCT01355679, completed) opened with a larger enrollment of 14 children fighting neuroblastoma, to test the feasibility and safety of actually treating kids with these individualized therapies. (Results published here). Now, the NMTRC was treating children using the data generated by their RNA expression profiles (what the first trial tested if was possible). In addition, as research, DNA mutation panels were done (these look at 50 common DNA mutations for cancer) to see if they’d be feasible / useful to add to the data gathered.
A significant partnership with Dell (along with an initial commitment of $4m, which has continued to grow over the years), brought Dell’s cloud supercomputing power to help analyze the data.
In May of 2012, we had written a blog update about the rapidly increasing speed and relevance of using genomics in realtime treatment, after discussions at the 2012 NMTRC Symposium:
This year focused heavily on personalized medicine trials, or targeted treatments. To explain, a little history — chemotherapy, which was only discovered in 1942, is the main treatment for cancer. Chemotherapy is poison — in fact, the first chemo was mustard gas, which was injected into patients after folks during World War 1 noticed it suppressed blood production. Because cancer grows faster than normal cells, the chemo kills cancer faster than it kills the body (is the hope), and then the body recovers (is the hope). You know all those pictures you see of bald, skinny, hollow eyed cancer patients? That’s not cancer doing that — it’s chemo. Of course, it’s the best we’ve had until now.
Since mapping the human genome, we can now attempt to target therapy. The NMTRC’s work is focusing on (among other things — and this is a high level overview) taking a biopsy of a tumor, identifying it’s mutations, and treating with a chemotherapy [sic — this could be various drugs] which will target ONLY these mutations — making the treatment go from systemic (poisoning the entire body) to targeted (poisoning only the tumors). It’s showing a lot of promise.
There’s a LOT of information, and up until recently it could take 17 days from biopsy to a list of targeted drugs (these are FDA approved drugs). Dell has stepped up this year to a long-term commitment to the NMTRC’s work with millions of dollars of hardware and systems analyzing. This has already cut over 2/3 of the processing time down — from 17 days to roughly 5 days.
Building on the past three years of research and continuing at, for the clinical research world, a rapid pace, a third personalized medicine trial by the NMTRC (NMTRC 008, NCT01802567, ongoing, but not recruiting participants) was opened, accruing 48 kids. The partnership with Dell suggested the hope to complete an RNA expression profile, a DNA Mutation Panel, genomic analysis and report generation, a tumor board held with treatment decision, and treatment review completed and start of treatment — all within 21 days of a child’s biopsy/surgical resection date. It worked.
Between 2013 and 2014, Dell continued to increase technology and speed, and where sequencing an entire DNA exome (important because it tests allyour DNA mutations, not just a common set) used to take 2 months (not fast enough to be used while treating children, or “clinically relevant”), it could now be completed in 2 weeks. Additionally, TGen became the first CLIA certified lab to have RNA sequencing available, in September of 2014. CLIA certification is needed to use RNA sequencing for treatment decisions. These major advances led the NMTRC to open a new trial.
In 2014, a 4th trial was opened (NMTRC 009, NCT02162732, currently recruiting participants). 48 children with cancer would be the goal to test again, now with full DNA exomes being completed, as well as RNA sequencing (remember, sequencing is a much deeper look than expression profile). This study would determine feasibility of using tumor samples to assess genomic sequencing using predictive modeling to make real-time treatment decisions for children with relapsed/refractory cancers. The entire DNA exome was now being sequenced (more powerful than a DNA mutation panel alone), RNA was sequenced, and the data was analyzed and a treatment decision made.
Watch this video to see how TGen and Dell are collaborating with Dr Sholler and the NMTRC to beat kids’ cancer.
A new paradigm in treating children with neuroblastoma.
In 2012, the ASCO Post wrote:
Although Dr. Sholler’s trials are the first attempt in personalized medicine for children with relapsed disease, if successful, genomic-based medicine for pediatric patients with cancer may eventually be used in the front-line setting, where the greatest chance for cure may be possible.
Today, that goal is being realized. Just 5 years after the NMTRC began clinical trials to research moleculary guided therapy in childhood cancer, in September of 2015 a new trial opened incorporating MGT into upfront therapy (PEDS-PLAN, NCT02559778, currently recruiting participants). This trial represents a new paradigm in treating children with neuroblastoma, based on and uniting the work the NMTRC has done with personalized medicine and a drug called DFMO, which hopes to stop neuroblastoma relapse. The trial, called Pediatric Precision Laboratory Advanced Neuroblastoma Therapy (PEDS-PLAN), suggests using molecularly guided therapy in combination with current standard therapy (COG protocol), followed by maintenance therapy with DFMO in subjects with newly diagnosed high risk neuroblastoma.
This is the first time DNA and RNA sequencing are being done in newly diagnosed patients.
A targeted agent (drug) is added to standard of care therapy. Because it is known from experience the expression profiles of tumors change throughout a child’s treatment, they do the RNA and DNA sequencing again after the 4th cycle of chemotherapy, when the tumor is removed. Using precision medicine in this way, in upfront therapy, truly gives the greatest chance for a cure. It’s expensive — full exome sequencing currently costs around $12,000, and RNA sequencing around $7,200. Dell has graciously committed to covering these costs during this trial.
Genomics is an exciting weapon in battling disease, and precision medicine has an army of advocates moving it forward. Not the least of these is thePrecision Medicine Initiative launched in January of 2015 by President Obama. The Precision Medicine Initiative’s mission is to enable a new era of medicine through research, technology, and policies that empower patients, researchers, and providers to work together toward development of individualized treatments.
Others are also carrying this work forward, even in childhood cancer. St. Jude and Washington University have launched the Pediatric Cancer Genome Project. Columbia University Medical Center is now sequencingevery pediatric cancer patient’s tumor. As the NMTRC marks five years into childhood cancer genomics research, more continue to join the battle.
A new trial, the NEPENTHE trial (Next-generation PersonalizedNeuroblastoma Therapy) is slated to begin in 2016. However, this trial is using only a DNA mutation panel for the results, not full exome sequencing. Their RNA sequencing is not being done in a CLIA certified lab, and therefore won’t be used to make treatment decision — critical in pediatrics, given the low mutation rate. Scientifically, this study will answer the target question for those drugs, but a concern will be how well these single or double agent treatments without chemo will affect relapsed neuroblastoma.
Collaboration is crucial to moving work like this forward. The NMTRC now has trials operating in over 25 institutions across the US and internationally. Partners like TGen in Phoenix and Dell in Austin add to the passion and expertise being directed to beating childhood cancer with genomics.
Precision medicine generates vast amounts of data. Converting that data into actionable (and effective) clinical outcomes is a very nuanced and learned approach. The physicians and scientists in the NMTRC continue to learn how best to make use of these new approaches, having worked through the process over 80 times now (data, rules, tumor boards to determine best treatment options).
Mature rules have been developed to determine what pathways and drugs are clinically relevant in neuroblastoma. Technical partners are refining analytics and sequencing processes, and speed keeps increasing. Advances in mobile and cloud computing will continue to offer more relevant and available data, and easier ways to digest it for use in the clinic (treating kids). The next five years are just as exciting as what’s happened already.
I wish Ezra could have been diagnosed today instead of in 2009. And of course I don’t mean that — if we’re granting wishes I’d wish he never experienced a single minute knowing what cancer feels like. I can’t help but feel proud, and energized, seeing the huge leaps in treatment and research in the 6 years since Ezra was diagnosed with stage 4 neuroblastoma. Robyn and I know in some small way, Ezra’s name will one day be one of so many whose stories led to a cure. With incredible and caring physicians and resaerchers like those in the NMTRC, and other passionate advocates like ourselves (hi BeatNB!), we will beat neuroblastoma.
If you’d like to be a part of this work being done to cure childhood cancer, we welcome your involvement. If you are a parent seeking information on any of these clinical trials (or anyone else with a comment), you can reach us atbecauseofezra.org/contact. You can support financially atbecauseofezra.org/give. Because of Ezra, Inc is a 501(c)(3) tax-exempt organization with the Internal Revenue Service. Our EIN is 27–4013571.
↑ Ezra. For more of his story, read becauseofezra.org/why.
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.