A Round for Rylee Recap

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FRIDAY OCTOBER 5TH.

It was raining all week, and supposed to rain the whole day.  Luckily our little angel had other plans.  We had been planning for this day for months now.  Eager for it to come, yet still heartbreaking that we weren't able to have Rylee with us.  We knew when Rylee passed away we wanted everyone to remember her name and how courageous she was.  This day, we accomplished that in more ways than one.

The morning was busy with last minute details, golfers checking in, it's still raining on and off.  Around 11:30, the rain stopped, the clouds parted, and a tiny sliver of the sun made its way over the course, and then I knew, Rylee was here.  I made an announcement to start off golf, thanking everyone for coming and celebrating our perfect baby girl.  I went out on the course selling raffle tickets and thanking everyone for coming.  I tried to convey my gratitude to everyone, and everyone's response was "We wouldn't miss it for the world, can't wait for next year!"  Tears filled my eyes as I hugged strangers coming out to support the fight against neuroblastoma.

After golf ended, everyone gathered outside the club house to see the helicopter ball drop.  Rylee was the most "EXTRA" baby you could have known.  Dancing while she ate, twirling her hair at any give moment, and the famous booty shake.  What is more extra than a helicopter at a golf outing?!  People could purchase a ball with a number on it.  Then the all the balls go up into a helicopter and they drop onto the green.  The closest ball to the hole, will win the money!  Dinner was amazing, and everyone enjoyed the raffles and silent auction.

We raised a net total of $34,616. 

The day as a whole was overwhelming, but in a good way.  To see how many people have supported us and our beautiful little girl along this journey is nothing short of amazing.  One day there will be a cure for neuroblastoma and no one will have to feel these feelings like we did and so many families before us.  Rylee will be remembered and honored forever because through her story we will raise funds to cure this terrible disease.

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Camp Hazelnut 2018 (Sister Hazel’s Lyrics for Life Foundation)

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We spent this weekend at the 4th annual Camp Hazelnut at Camp Crystal Lake outside Gainesville, FL. The Camp Hazelnut goal is simple: create a playful, safe, uplifting experience for kids and families navigating the overwhelming challenges of a cancer diagnosis… a place to simply get away and come together.

The band members from Sister Hazel organize the event through their nonprofit Lyrics for Life. Lead singer Ken Block and the band formed the nonprofit in memory of Ken's brother Jeffrey Block, who died at 14 years old after battling cancer for 4 years.

Earlier this year, Lyrics for Life donated $10,000 in Jeffrey Block's name to Beat Nb, to fund innovative clinical trials and bold research to keep beating cancer for kids.

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My little guy Charley had a blast doing archery, canoeing, rock climbing, the hay ride, and enjoyed the dance party and Sister Hazel post-luau concert on the beach.

We got to hang out with multiple neuroblastoma families, and missed a couple who were there last year but couldn't make it this year. It's really a great couple days disconnecting from the world, and laughing with a bunch of people who understand the childhood cancer world.

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One of my favorite things about this weekend, is the genuine heart of the Sister Hazel band members. They are there all weekend long, with their own kids. They participate in all the activities, hang out with the kids and know their names... they really care. I love seeing good people doing something good because it matters to them.

From all of us at Beat Nb, and on behalf of my own family even though we lost our son, thank you Sister Hazel. Keep doing good things.

And of course big ups to Wyc Grousbeck & Emilia Fazzalari, and the Boston Celtics Organization for their support of the weekend too.

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About the Author

Kyle Matthews

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Kyle serves as Executive Director of Beat Nb. Previously founder and Executive Director of Because of Ezra, multiple nonprofits with a shared mission merged in June of 2016.

Karaoke 5k (the recap)

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I reached out to Beat Nb in April of this year. It’s an organization that I had been following here and there for some time while my son Nnamdi was alive. Nnamdi passed away on October 31st of last year after battling the disease for 18 months. He was two. By April of 2018, I was physically and emotionally exhausted from being sad all the time and wanted to do something that I felt will bring purpose in some way to Nnamdi's passing. That’s how Karaoke 5k was born.

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My heart resonates with Beat Nb as an organization because it is founded and run by parents whose children have fought or are currently fighting this disease. Kyle Mathews was my contact and cheerleader through out this process. From the start of planning and up until the day of the event, he remained encouraging and supportive. The primary goal of BeatNB is preventing relapse and increasing survival using a drug called DFMO which has been shown to increase survival rates in children with high risk NB. Prior to DFMO, children who had relapsed had little to no options; now we are seeing the tide turn with this new medication. I wish my Nnamdi baby had this opportunity, and it’s for this reason that we did Karaoke 5K! To raise awareness, and funds for continued research so that no one has to lose their Nnamdi.

I am so humbled by the support I have received through this experience. I want to thank everyone sincerely. I am so grateful to our amazing sponsors, who did not hesitate to give financially to our cause, our volunteers who gave of their time and talent and the individuals who took time to register to run. Also thankful for my family and friends who have navigated this journey with me and have supported me along the way. I am thankful for my children who literally save me everyday, and to my husband, my person, I can’t imagine this journey without you. This is for you Nnamdi baby. We love you.

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A deeper look at the recent DFMO paper…

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Neuroblastoma (NB) is the most common solid tumor found outside of the brain diagnosed in kids.  Two years of age is the average time when a child is diagnosed, and about half of these kids are diagnosed with high-risk (HRNB), which has a very poor prognosis.  And sadly, this is despite very intense treatment given to these toddlers to treat HRNB. This treatment would typically include 5-8 cycles of induction chemotherapy, surgery to remove as much of the tumor as possible, one or two cycles of high dose chemo - that can only be survived by receiving an infusion of stem cells given to you while you remain in isolation. This is then followed by radiation therapy, anti-GD2 antibody (which is very harsh) plus cis-retinoic acid therapy.  This is a grueling regimen with multiple modalities which can on their own be fatal, and the entire process creates a whole host of intense short and long term side effects.

For children who make it through all of this therapy and are somehow still in remission the fact is that survival numbers (5 years out,  when these kids are likely 7 years old) have not improved significantly in the past 20 years.

For those kids who did not respond to initial therapy - or who relapsed following front-line therapy - if they were fortunate enough to respond to additional interventions and get into remission a second time, sadly they have a high rate of another relapse. Generally 80-90% of these kids will relapse again within 2 years, and there is no known curative therapy to treat these children with.

It is clear this is a patient population in desperate need of new therapeutic options.  And given the heavy treatment burden that comes along with the current upfront standard of care, there is no room left for additional toxic therapy.

This is the current bleak landscape for kids battling this deadly cancer.   We share this backdrop of the natural history of this disease in order to provide the context to properly highlight the recent breakthrough for this patient population reported this year.  

A paper titled “Maintenance DFMO Increases Survival in High Risk Neuroblastoma” was published on September 27th 2018 in the Nature Journal “Scientific Reports” about a phase II clinical trial.  A drug called DFMO was given to patients in remission from HRNB and the results were not only encouraging but frankly rather amazing.  In summary the study authors found:

DFMO targets a novel pathway and therefore is likely to provide a novel therapeutic strategy for maintaining long-term remission in children with high-risk neuroblastoma. DFMO given to children with high risk NB following completion of either standard multimodal therapy or salvage therapy for relapsed/refractory disease was both well tolerated and appeared to improve the event free and overall survival rates when compared to historical controls.”

This is such a remarkable result because a very well tolerated single agent drug was shown to increase survival in kids with HRNB.  Not only did it increase survival, but it is an oral medication that can easily be taken by toddlers. And in an even more astounding twist, almost 70% of the kids on the study reported NO side effects at all.  When compared to the treatment these kids are forced to endure for a chance to even get into remission - and to see their extraordinary quality of life while on this maintenance therapy for two years - it is hard to reconcile that both side effect profiles are being used to treat the same disease.

Maintenance therapy is something that most childhood oncologists are very familiar with in other types of childhood cancer - with leukemia being the best example. However, the idea of an extended maintenance therapy for NB is not something that has historically be done.  As mentioned above this drug was given to kids for two years who were in remission from NB.

Let us take a minute to answer the question: Why?  

There are two very simple reasons:

  1. If you have NB and are able to achieve remission after finishing initial treatment:  34% of these kids relapse within 2 years and 41% will relapse by 4 years.  Sadly the figures also show that 14% of these kids will be dead within 2 years and the number of kids killed by this disease doubles by year 4 when 28% of those kids will be dead.
  2. The numbers are even more sobering if you had your disease relapse and were then able to get back into remission as 94% of those kids relapse within 4 years and 80% of those kids will be dead within 4 years.   

Simply getting kids with HRNB into remission is not enough - while some kids do initially respond to this harsh therapy, the response is not durable.  It is a very dynamic and fast growing tumor which may at times respond to traditional cytotoxic chemotherapy. However, biologically there is something driving HRNB tumor growth that is not being addressed with the current therapies utilizing high dose chemotherapy, radiation, immunotherapy and transplant.  

The idea behind this study was that perhaps DFMO’s unique targeting of the NB cells - identified in a phase I trial used to treat relapsed and refractory NB - could help to keep kids in remission.  NB parents and doctors do not say “my kid is in remission” they instead say  “my kid is N.E.D. (no evidence of disease),” because they all know clear scans do not tell the story of this disease. There is a cancer cell population in NB that does not show up on scans but it is clearly there - and perhaps a 2 year maintenance therapy targeting those cells could finally lead to durable remissions for these kids.

So that is what this trial set out to do in two groups of patients. The first group of kids this study analyzed were 100 kids who enrolled on this maintenance trial after having completed upfront therapy and were still in remission.  

These kids took DFMO twice a day for two years and the results showed:

84% of these kids STAYED in remission after 2 years

97% of these kids were still alive after 2 years.

Even more remarkable was the fact that:

At 4 years 83% of these kids were STILL in remission and

At 4 years 96% of these kids were STILL alive.  

These percentage increases would be amazing even if they were just being seen at the two year mark. However, the truly breakthrough results coming from this paper are that these results appear to be inducing a sustained remission never previously reported for this disease.

The second group of children this study analyzed were 39 kids who had achieved a remission after having previously relapsed or not responding to upfront therapy. As mentioned above this is an especially difficult patient population that historically has been deemed ‘incurable.’ The results here were also remarkable - and even keeping in mind the smaller number of patients viewed here - these results are eye opening given the historical rates of relapse and death for this patient population.  This is a heavily pretreated population who not only had to endure the harsh upfront therapies but also had received various relapses therapies - with this group having a mean of 3.3 previous relapsed therapies and and overall mean time from diagnosis to enrollment of 3.4 years.

Kids still in remission after 1 year:

Before - 21%   With DFMO - 56%

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Kids still alive after 1 year:

Before 57%   With DFMO - 95%

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Kids still in remission after 4 years:

Before - 6%   With DFMO - 44 %

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Kids still alive after 4 years:

Before - 20%   With DFMO - 62%

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Now let's take a look at the subgroup of kids whose tumors were MYCN amplified

MYCN+  Kids still in remission after 1 year:

Before - 13%   With DFMO - 71%

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MYCN+ Kids still alive after 1 year:

Before - 30%   With DFMO - 86%

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MYCN+ Kids still in remission after 4 years:

Before - 0%   With DFMO - 57%

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MYCN+ Kids still alive after 4 years:

Before - 0%   With DFMO - 69%

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These results - including toxicity profile, increases in survival, and sustained remissions - show the potential for a dramatic increase in survival for a group of patients that have historically done poorly.

Let us further break down - and define - the characteristics that make up each of these patient groups reported on.

What are the categories of patients covered in the paper?

Stratum 1:  

This includes patients who were diagnosed with neuroblastoma and enrolled on the standard treatment for their disease where they lived.  These kids then completed their upfront therapy and were 'done' with treatment. This is normally where kids stop all treatment and hope it works (66% of these kids make it two years without dying or relapsing).  Instead? These stratum 1 patients started taking DFMO for two years with the goal of preventing relapse and increasing that 66% figure.

Stratum 2:

This includes patients who had previously had their cancer come back - or their disease did not respond to the upfront therapy - and then were able to get back into remission.  These stratum 2 kids were also given DFMO for up to two years once they were in remission to see if you could keep their disease from coming back.


Historical Survival Curves for kids who are NED for Stratum 1

Before we get to defining the historical percentages of survival, let's first outline what we are measuring to calculate survival.  The goal of this study was to see if the 2 year EFS and the 2 year OS could be improved upon.

EFS: Event Free Survival - this tells you the percentage of kids at two years who have not died and who have not relapsed with new disease

OS: Overall Survival - this tells you the percentage of kids at two years who are still alive.  This includes kids who are still alive but may be battling a new relapse.

Stratum 1 Historical numbers:

There are numerous upfront therapies that you could enroll on (the European protocol, a protocol out of Sloan in New York, or the current standard in the US which is from a study called ANBL0032).  Currently, the best published results ever reported on upfront neuroblastoma survival come out of that ANBL0032 trial - it is the current 'gold standard' in the US.

What is remarkable is out of the 100 kids who enrolled and could be evaluated in Stratum 1 for the DFMO study, 81 of them did so directly after finishing their enrollment in the ANBL0032 study.  So what are the survival statistics for the current gold standard?

Prior Best  2 year EFS

2 year EFS - From the start of immunotherapy was:

66% at 2 years

Prior Best OS

2 year OS - From the start of immunotherapy was:

86% at 2 years

So prior to DFMO - in the history of mankind - the best published results for 2 year survival for kids with high risk neuroblastomas (HRNB) showed that 66% of them could get 2 years out from the start of antibody before relapsing or dying - and that 14% of the kids would be dead within 2 years of starting antibody.

DFMO Comparison

At this point - it is critically important to explain the next step in the process.   While we have the 2 year EFS/OS numbers for DFMO it is not correct to directly compare them to the numbers above.

Why?

It is at this point in the process where we need to explain how you can not - and this paper is not - doing a direct comparison from the numbers above (66% - 86%) to this study.  Let me explain why.

The above ‘gold standard’ results looked at 2 year survival from the first dose of antibody given to the kids in the prior study. They were measuring if the addition of an anti-GD2 antibody would improve survival so their start point was the start of immunotherapy.

For this new paper looking at DFMO maintenance therapy lets look at the subset of 81 out of the the 100 patients from Stratum 1 who immediately prior to enrolling on the DFMO study were enrolled in the very 'gold standard' of care study we mentioned above.

These 81 kids were not 'like' those patients - they were actually on that prior trial - and thus provide a remarkable contemporaneous control group.  As a result - this subset of 81 patients was used to perform an analysis of patient risk variables that were matched to prior ANBL0032 study kids - including time from diagnosis to enrollment on the study, initial disease stage, MYCN status, age at diagnosis and response to induction therapy.

What does this mean?

What they did was discover that the median time from the start of antibody therapy in the prior study (when they started to measure the EFS/OS that resulted in the 66% and 86% above) to the time that these kids took their first dose of DFMO was 7.2 months.

Sadly, in that 7.2 month period from when they began measuring survival to the time these stratum 1 kids would have gone on DFMO you have some kids dying and some kids relapsing.  It would unfairly inflate the results if you excluded that time frame so the statisticians looked at the results that were published from the ‘gold standard’ study to determine the following:

What was the EFS/OS of that study 7.2 months out from the start of immunotherapy?

EFS 66%

7.2 months later - after accounting for the relapses/deaths - they are now comparing the DFMO kids to an EFS of 75%

OS 86%

7.2 months later - after accounting for the relapses/deaths - they are now comparing the DFMO kids to an OS of 91%

What does all of this mean?

Since the best survival numbers ever published started measuring survival on the day that kids starting taking antibody - and on this new study the average kid started taking DFMO 7.2 months after their first dose of antibody - you have to account for all of the relapses and deaths of kids that took place in that 7.2 month time period while on antibody. By getting the EFS & OS from their curve at this time point you are able to make a direct comparison.

So let's get to it.

Stratum 1 patients survival DFMO vs. NO-DFMO (81 patients subset)

2 year EFS with DFMO: 86% (vs. 75% for those without DFMO after the 7.2 month adjustment)

2 year OS with DFMO:   97% (vs. 91% for those without DFMO after the 7.2 month adjustment)

Stratum 2

As previously mentioned the stratum 2 patients were very different than the patient population in stratum 1 which “... includes patients who had previously had their cancer come back - or their disease never responded to therapy - and then somehow were able to get back into remission.  These kids were then given DFMO for up to two years to see if you could keep their disease from coming back.”

Historical Survival for kids who are NED for Stratum 2

Treatment for relapsed or refractory neuroblastoma involves many different therapies and approaches (chemotherapy, radiation, MIBG, antibodies, etc..) offered in a phase I or phase II setting or simply as an off-label use of a drug combination in an effort to find something that is effective. At best these treatments have had modest response rates which are sadly followed by high rates of relapse “generally 80-90% within two years”.*

With so many different and highly toxic therapies having such a low response rate this patient population seemed an ideal place to try and increase survival with a novel and low toxicity approach in light of the heavy pretreatment burden these kids have to endure.

A review of recent studies published in 2017 determined the historical rates of progression free survival (PFS) and overall survival (OS).  They are listed below and not surprisingly the outcomes were worse for those kids with MYCN amplification in their tumors.*

*London, W. B. et al. Historical time to disease progression and progression-free survival in patients with recurrent/refractory neuroblastoma treated in the modern era on Children’s Oncology Group early-phase trials. Cancer123, 4914–4923, https://doi.org/10.1002/cncr.30934 (2017)

PFS

  • 1 year: 21%
  • 4 year: 6%

OS

  • 1 year: 57%
  • 4 year: 20%

MYCN amplified PFS

  • 1 year: 13%
  • 4 year: 0%

MYCN amplified OS

  • 1 year: 30%
  • 4 year: 0%

Stratum 2 Results

There were 39 kids who enrolled in stratum 2 who had received various upfront and relapse therapies.  There is a median follow up time of 3.7 years (range of 2.1 - 5.8 years).

First we’ll take a look at the 2 year EFS/OS for all stratum 2 patients and then we’ll dive deeper to compare the refractory to relapsed patients in this group.

EFS for ALL stratum 2 patients

2 year: 54%

OS for ALL stratum 2 patients

2 year: 84%

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EFS for RELAPSED stratum 2 patients

2 year: 35%

OS for RELAPSED stratum 2 patients

2 year: 80%

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EFS for REFRACTORY stratum 2 patients

2 year:  68%

OS for REFRACTORY stratum 2 patients

2 year:  89%

As you can see the overall EFS/OS numbers are better for all the kids on DFMO at 2 years than the previously reported one year survival figures!  Even the relapsed kids EFS/OS is better at two years than historical 1 year survival.

However, the figure that really jumps out at you from this paper is the EFS of 68% and the OS of 89% at two years for the kids with refractory disease.

What does all of this mean?  What is next?

With few exceptions the standard of care for neuroblastoma - be it upfront therapy at diagnosis or with salvage therapy post relapse - has not changed dramatically in the last twenty years save for the introduction of an anti-GD2 antibody therapy.  And while there was a demonstrated increase in two year EFS and OS with this therapy the cost and toxicity are not to be ignored. More importantly, the latest update provided on the results of the ANBL0032 study that demonstrated this increase in survival is showing that at 4 and 5 years out from the start of antibody the difference seen in EFS/OS for kids who did - and did not - get antibody are becoming no longer statistically significant.

Therefore, it is imperative that something be done to:

  1. Get more kids into remission

  2. Keep more kids there

  3. Work to decrease the toxicity currently used to achieve goals 1 & 2 above

Given those needs and the encouraging results from this study the following steps are underway with the development of DFMO.

  1. After meeting with the FDA another phase II confirmatory trial was opened.  The goal was to replicate the results seen in this trial with a shorter time to enrollment along with further stratification of patients (COG, Sloan, Europe,etc…).  This trial will be finished enrolling patients in 2018 and with the study endpoints being two year EFS and two year OS the results will be completed by the end of 2020.

  2. In the study that was published - as well as in the confirmatory study mentioned above - DFMO is given after patients are finished with their anti- GD2 antibody.  Sadly, about 14% of the patients who take this antibody relapse while taking it. Therefore, a trial was opened three years ago (September of 2015) for kids newly diagnosed with NB that is randomizing kids onto DFMO when they start antibody. Half of these kids will be given DFMO during antibody - the other half will start it at the end of antibody.  This study is giving DFMO during antibody in order to see if that 14% relapsed figure could be reduced.

The goal is to see if DFMO can keep more kids in remission while finishing upfront therapy. This would then allow these kids - who would have otherwise relapsed - to continue taking DFMO for the two year maintenance period.

About the Author

Patrick Lacey

Pat serves as President of the Board for Beat Nb, and founded the group in 2010.

Maintenance DFMO Increases Survival in High Risk Neuroblastoma

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Many of you have been seeing the headline about DFMO over the past week. I’m talking about:

Maintenance DFMO Increases Survival in High Risk Neuroblastoma (full paper link here).

More simply put, DFMO saves lives.

The numbers don’t lie - neuroblastoma is a deadly form of childhood cancer. The grueling upfront treatment process can easily take a year and involve multiple treatment modalities. The physical and emotional toll on a patient and his/her family is severe, only mitigated by the fact that neuroblastoma usually responds quickly to treatment. Until only a few years ago, if a patient was declared NED (no evidence of disease – more on that in a minute) at the end of the treatment plan, there was nothing further to be done. Except for scans. New sets of scans would be required every three months for a number of years.

There is a reason that neuroblastoma patients found to be clear of cancer are never referred to as “cured.” No, for them NED is as good as it gets. And why must these kids undergo grueling diagnostic imaging every quarter?

Because neuroblastoma is relentless. When it comes back, which it does for 34% of kids within the first two years of achieving NED, it is often with a vengeance. Case in point: within four years, nearly 30% of those children will be dead.

So why does neuroblastoma come back? One theory is that it never really left in the first place. In other words, malignant cells are able to evade current diagnostic imaging technology.

Even ten years ago relapsed neuroblastoma was considered terminal. There was simply nothing else to be done. The disease had come back and if it didn’t respond wholly to chemotherapy the first time, it wouldn’t a second time (this is what parents were commonly told along with advice to “Make the most of the time you have together.”)

But what if there was a way to prevent relapse from happening? Instead of waiting for it, why not get out ahead of it?

And that’s why last week’s news on DFMO is earth-shattering. The study results firmly support the notion that a maintenance therapy – think low dose, easily tolerated, few side effects – provides additional defense against relapse.

So are you ready for the numbers? Are you ready to feel positive and hopeful and proud and ready to help us get this treatment to every child?

For kids that took DFMO after getting into a first remission, 84% stayed in remission after two years and 97% were still alive after two years as well. And at the four-year mark, 83% are still in remission and 96% are still alive.

The results from a second group of 39 participants that entered the trial after a relapse or with refractory (disease that is present but stable) neuroblastoma also had incredible results. Remember, not long ago these kids would have been deemed terminal. In this group, 56% of kids where still in remission after one year. Without DFMO this number would be more like 20%. And in terms of overall survival, with DFMO 95% of kids were alive one year later; without DFMO, less than 60% would be alive. At the four-year mark, 44% of kids were still in remission (compared to 6% otherwise) and 62% were still alive (compared to 20% otherwise).

One last stat to share. In the world of neuroblastoma, a cancer that is pathologically found to be “amplified” with something called MYCN historically have a harder fight since amplified cells grow fast and spread with ease.  In this group, 71% of kids were still in remission after one year. Without DFMO this number would be just barely above 10%. Overall survival rate at the one year mark was 86% thanks to DFMO; without the therapy, survival at 12 months out would only be 30%.

Finally consider the amplified kids at four-years: 0% would be alive without DFMO. With DFMO? Nearly 70%.

If you would like to learn more, the link to the published study is here. There's also a deeper dive blog post we wrote. We will be diving into what this all means in greater detail over the next week or two. Thank you all for believing in us and for your blood, sweat, and tears to help us get to this amazing moment in Beat Nb history. Stay with us as there is still work to be done to. Together we WILL Beat Nb.

About the Author

Jen Crowley

Jen Crowley and her husband John live in Rochester, NY where they are raising three children, Padraig (11), Noel (8), and Eloise (6). The Crowley’s first child Cian died of neuroblastoma in 2006; brother Padraig was diagnosed with stage IV neuroblastoma in 2014. Jen is a healthcare PR/mar com professional that is delighted to apply her skills and amazingly awful life experiences to help end this disease.

A Hole in One for Harlow – Evansville, WI

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A Hole In One for Harlow, presented by our naming sponsor, Retirement Income Strategies, held its inaugural golf outing on September 8, 2018 at the Evansville Country Club in Evansville WI.  After a week of torrential downpours and concerns over continued rain on Saturday, the skies parted and the sun shone with a light breeze while twenty teams of golfers ranging from amateurs to PGA professionals teed off at 10am with a shotgun start.  Several holes held friendly competitions in an effort to raise funds as well as increase the stakes for the coveted first place bragging rights!   

Among the hole prizes, A Hole in One for Harlow also offered several silent auction items and dozens of raffle prizes ranging from golf outing vacation packages to NCAA football and basketball tickets and autographed professional hockey items.  Thanks to all of our generous donors, there were prizes for participants and spectators in every age range!

The beautiful afternoon came to a close with a dinner and the raffle prize drawings.  Thanks to our incredible sponsors, donors, participants and volunteers, our first golf event raised over $25,000 to help fund research that will not only find a cure for Harlow’s neuroblastoma, but for all children battling neuroblastoma.  

Thank you!

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About the Author

Kim Katzenmeyer

After a career in education, Kim left teaching when her niece Harlow was diagnosed with neuroblastoma. Now she's helping with Beat Nb's fundraising in Wisconsin. Kim, like Beat Nb, is #HarlowStrong.

 

Patriots Present Patriots Difference Maker of the Week Award to Patrick Lacey from Braintree, Mass.

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FOXBOROUGH, Mass. (Sept. 14, 2018)Eight years ago, the Kraft family and Patriots Foundation introduced Celebrate Volunteerism, a season-long initiative focused on recognizing community volunteers and promoting the importance of giving back to the community through service.

Throughout the 2018 season, the foundation will continue its Celebrate Volunteerism initiative by teaming with nonprofit organizations to educate fans about the need for volunteering, highlighting deserving volunteers from across the region and seeking to inspire Patriots fans to become lifelong volunteers. The foundation will present a weekly “Patriots Difference Maker of the Week” award, which recognizes deserving volunteers who go above and beyond to support their New England communities.

“We originally started the Celebrate Volunteerism initiative as a tribute to my sweetheart, Myra,” said Patriots Chairman and CEO Robert Kraft. “Over the past eight years, it has become the heart and soul of the Patriots Foundation, just like Myra was. We enjoy shining the light on local volunteers that are committed to improving the lives of children and families across the region and we hope that this inspires our fans to get more involved in their communities.”

To kick off this season’s Celebrate Volunteerism campaign, Patrick Lacey from Braintree, Mass. was selected as the first 2018 Patriots Difference Maker of the Week for his commitment to Beat Nb Cancer Foundation.

In 2005, Patrick was informed that his seven month old son, Will, had neuroblastoma cancer. Eighteen months later, Patrick was told that Will’s cancer was incurable. Patrick refused to accept that fate and set out to find a cure.

In 2007, Patrick established the Beat Nb Cancer Foundation to help children, like his son, who are battling neuroblastoma. His fundraising has allowed the organization to establish life-saving clinical trials across the country. Since its inception, Beat Nb has created more than 20 clinical trials spanning more than 40 hospitals across the United States. More than 1,000 children have been treated and positively impacted by these trials.  Patrick also started a drug company to manufacture the therapies needed to save lives.

"After being told our son was incurable we began a journey to change that,” said Patrick.  “We were so fortunate that we found the right doctor, and through funding her research, she found a treatment that did work.”

Thanks to his volunteer efforts, Patrick has positively impacted the lives of thousands of children, including his son, Will, who is now in middle school, playing a variety of sports and has been free of cancer treatments for more than three years.

“Our mission now is to continue to fund this work so that every child with a deadly cancer gets the same opportunity at life that my son was given,” Patrick said. “We'll continue the fight until ever diagnosis comes with the promise of a cure."

Fifteen individuals will be named Patriots Difference Makers throughout the season. The outstanding volunteers will be recognized on the Patriots website and in print materials, including Patriots Football Weekly and Patriots GameDay magazine. They will also be honored during a special ceremony at the Patriots final regular season home game against the New York Jets on Sunday, December 30.

Fans are encouraged to nominate a local volunteer for the Patriots Difference Maker of the Week award by visiting www.patriots.com/community.

Gold: An Evening to Beat Childhood Cancer (Tampa, 2018)

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It was a beautiful and perfect evening.

Presented by CrossCountry Mortgage, Inc, with incredible support from the Ryan Callahan Foundation, Papa Johns, and the 13 Ugly Men (among many others), Beat Nb's Gold: An Evening to Beat Childhood Cancer raised over $265,000 on Sept 8 at Armature Works in Tampa.

350+ caring, passionate people came together to celebrate how we are beating cancer for KIDS. Alongside Tampa Bay community leaders were the true heroes - over a dozen families whose kids have battled, or are currently fighting childhood cancer.

Our lead researcher, Dr Giselle Sholler, was in town from Grand Rapids, MI, as well as our board president and founder Patrick Lacey.

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The evening was spent celebrating the work Beat Nb is driving to beat neuroblastoma and other cancers. September is childhood cancer awareness month (the ribbon color is gold, hence the name of the event). We honored the families in the room whose children are beating - or have beaten - neuroblastoma, and our hearts were broken alongside those who had lost a son or daughter to cancer.

We also premiered our latest video: Beating Cancer, featuring real-life hero Cambri, whose fight vs neuroblastoma cancer is very real, although the video fictionalizes a bit.

Our Executive Director, Kyle Matthews, shared a song written for he and his wife Robyn's son Ezra, who died in 2010 from neuroblastoma. You can listen to it under this text section.

Locally owned Papa John's franchisees announced their September partnership with Beat Nb, donating $25,000 in celebration of their 25 years operating in Tampa Bay. The Ryan Callahan Foundation, led by Tampa Bay Lightning Alt Captain Ryan Callahan and his wife Kyla, also donated $25,000. And Lightning players Steven Stamkos, Victor Hedman, and Dan Girardi added yet another $15,000 to that total. A local group of philanthropists, the 13 Ugly Men, committed $25,000 as well - they are making Beat Nb the beneficiary of their upcoming Halloween party in Tampa.

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We are beating cancer for kids. The evening felt like a new chapter, a marker as we move forward continuing to put a stop toward this stupid beast called neuroblastoma, a collection of parents, researchers, and supporters who say it is simply NOT right that we're losing our kids. The research consortium we helped to found - and solely fund - is now in 45 hospitals and research institutions worldwide.

This is not pie-in-the-sky hopes and dreams, or emotional stories with nothing behind them. Beat Nb is real hope through effective clinical trials, shared from the very families who are benefiting from this work - or who've lost a child and now drive change forward.

To every one of you who played a part, or who play a part in the work we're doing...

thank you.

Huge, magnificent, heartfelt thanks to our sponsors:

  • CrossCountry Mortgage, Inc
  • Armature Works
  • Chappell Roberts
  • St Petersburg Distillery
  • Tampa Bay Lightning
  • Tampa Bay Rays
  • Papa Johns
  • 13 Ugly Men
  • Ryan Callahan Foundation
  • Lyrics for Life
  • Landon Outreach Foundation
  • TradeStops
  • Csenge Advisory Group
  • DoMyOwn.com
  • Glory Days
  • Deliver Media
  • Enstar
  • Hivelocity
  • Sykes
  • Hyundai of New Port Richey
  • TECO

And to our community partner, Florida Blue.

Running 200 miles for Lola

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Team Lola

A couple weeks ago some of our friends and family came together to support neuroblastoma research and trials in the craziest way yet! Together we RAN 200 MILES! What an experience it was! Our team of 12 raised over $14,000 to fight for children with the neuroblastoma, the beast that took our precious Lola Mae from us two years ago. Everyone on our team have witnessed the terrors of cancer. Maybe that’s why they were so INCREDIBLE during the race?! Jeff and I were honored to have each one of them fighting at our side.

I’ve never been a part of a relay race like this before, but it turned out to be such an amazing experience and my favorite race yet. Some of us on Team Lola are busy moms and dads that barely have time to “get in shape” for such an event. Some were college athletes that could not be phased by the extreme conditions of heat and endless hills. One friend is an ultra-marathoner, while another friend doesn’t even like running, she just says yes to these crazy adventures for Lola. No matter our experience level everyone came together and fought hard though each mile.

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A couple weeks before the race I found out from my doctor that I would not be able to run. It was very disappointing to not get to participate in something that I had dragged so many loved ones along for and we had been fundraising and working so hard towards. But my teammates stepped in and shared my load. My sister ran my first leg, my friend ran my second, and I got to walk my third leg.

Last year we did a half marathon to raise money for Beat Nb as well and afterwards Jeff discovered through pain and some MRIs that he cannot run anymore due to years of wrestling and too many knee surgeries. Even though we weren’t able to run we still gained a great experience.

Our team fought so hard we actually ended up placing 24th out of 526 teams! It took us 27 hours to finish. Most of that time was spent in a van, smelly and tired, chasing the current runner and getting to the next exchange point. We encouraged one another and laughed together. We discussed the latest cancer trials and where we could find a cold beer. Occasionally we closed our eyes for a power nap before hitting the pavement again.

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Jeff drove one of the vans during the race and was there to encourage each of Van # 2’s runners. I was told he didn’t sleep and survived on 5-Hour Energies and sunflower seeds;) Being a part of the Ragnar Relay as Team Lola for Beat Nb is an experience we will always be grateful for. It was yet another moment in our lives where we were overwhelmed by the support of our amazing family and friends.

Thank you Leigha, Heather, Jesse, Ashley, Jake, Aaron, Ruby, Lane, Luke, and Levi for being Team Lola. And thank you Kyle, who runs for his son Ezra, for being our team captain. They are so amazing that they just might say yes the next time we ask them to so something crazy for Lola;)

About the Author

Kylee Nimrick

Kylee's daughter Lola Mae was a joyful spirit since the moment she first held her in her arms. She smiled big, hugged softly, and twirled beautifully. She was carefree and imaginative, always playing and happy. At two years old she was already defending her big sister from unfriendly children on the playground. When Lola was 4 years old she was diagnosed with neuroblastoma. She fought hard through so much, and she did so saying, “I can do it!” The Nimrick's hearts were broken when she received her final healing by going to Heaven after her year-long battle.

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Waylon’s $10,000 Pig

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As a teacher at Evansville High School, I had gotten to know Waylon very well throughout his freshmen year.  When I made the announcement that I was leaving teaching in order to do as much fundraising as I could to support Beat Nb in finding a cure for neuroblastoma, Waylon visited my classroom the following morning.

He said, “Mrs. K, I really wish you weren’t leaving, but I talked it over with my parents and I’d like to give you this for your cause.  For Harlow.  For Beat Nb.”  In his hand, he presented me with $52 wadded up dollars. I immediately contacted his mom to find out if she was aware of his donation, but she was well aware of why I called.  With his parents’ blessing and support, Waylon made his first donation to Beat Nb in Harlow’s name… but it didn’t end there.

Waylon came back to me a couple weeks later and said, “Mrs. Katzenmeyer, you’ll never guess what I did this weekend!! I planted a 3-Acre pumpkin patch!!! I want to grow the pumpkins and sell them in the fall…for Harlow”.  Again, I was speechless; what do you say to a 15-year old young man who is dedicating himself to the well being of others? Unbeknown to me, he was just getting started…

Waylon and his siblings enjoy participating in the county 4H fair projects each year.  They take great pride in purchasing (from their own savings), raising, and caring for pigs and turkeys as they prepare to display them annually at the county fair.  Waylon had purchased two pigs for the 2018 fair and was determined to sell one of them at the meat animal sale…for Harlow.

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He decided he could sell one of his pigs to cover his project expenses and sell the other one for Harlow.  However; when it came time to weigh in for the fair, Waylon’s “Harlow” pig didn’t “make weight” so he was prohibited from selling that one in the public animal sale.  This was a considerable setback for Waylon since he’d now have to find a private buyer for his “Harlow” pig and have faith that he’d make enough to pay his expenses.  Without a second thought Waylon decided to sell his remaining pig for Harlow, even if it meant taking a loss on his projects for the year.

Friday, July 27, 2018 Waylon Klitzman prepared to sell his only “eligible” pig to an audience full of bidders as the auctioneer introduced him…

“This is Waylon Klitzman. He will be a sophomore at Evansville High School and is a member of the Evansville 4H Club.  Today he will be donating the money from the sale of his pig to Beat Nb in honor of a little girl in his community named Harlow Phillips.  Harlow is currently being treated for neuroblastoma. She has had many treatments and has been in the hospital a lot in the last several months.  She is only 4 years old.  He wants to donate to Beat Nb to help find a cure for Harlow so she can just be a kid and not have to fight the beast anymore.”

After a round of applause and standing ovation, bidding started fast and before we knew it, the winning bid was made by E&D Water Works of Janesville at $11.50/lb!!  As the auctioneer congratulated the winner, the E&D representative donated the pig back to the sale to be sold AGAIN!!!  Waylon’s smile spread wide across his face.  INCREDIBLE!!  The bidding opened a second time and a second winner, Chambers and Owen, won the pig for another $10.25/lb and again…they donated the pig back to the sale!!!

Waylon made his way back to the front for the 3rd time! Moll Construction purchased the 3rd round of bidding for $11/lb and again, Waylon’s pig was donated back to be sold a 4th time! The look on Waylon’s face was priceless; grinning from ear to ear and so proud of his accomplishment, he took his place at the front of the sale arena once again and finally, after 4 rounds of bidding, Badger State Auction/East Point Pub, Rock County Pork Producers and Ott Schwietzer et al purchased Waylon’s pig for $5.50/lb.  The crowd erupted, stood and applauded the bidders and Waylon.  It was a moment I’ll never forget.  Waylon raised over $10,000 from the sale of that pig.

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Waylon is generally a young man of few words.  He is a hard worker, fiercely loyal and his heart is made of pure gold.  He said he’d never felt more proud of anything he’d done and can’t wait until his pumpkins ripen so he can keep donating to such a worthy cause.

On behalf of so many kids fighting neuroblastoma, thank you Waylon!

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About the Author

Kim Katzenmeyer

After a career in education, Kim left teaching when her niece Harlow was diagnosed with neuroblastoma. Now she's helping with Beat Nb's fundraising in Wisconsin. Kim, like Beat Nb, is #HarlowStrong.