Jay Scott: Research Breakthrough... and ALSF helped make it possible!

I’m on a plane as I write this heading down to Florida to visit the winning school from our Great Lemonade War contest (more on that in another blog), but can’t ignore the great news that was announced last night in the childhood cancer research world. If you haven’t already heard, early results from a clinical trial found that a drug that was being used to treat lung cancer in adults (crizotinib), was found to eradicate cancer in some kids with a rare type of lymphoma (anaplastic large cell lymphoma – ALCL). That’s right, eradicate – no trace of the cancer can be found in 7 out of 8 kids who had ALCL and were enrolled in the trial. Better yet, it was a simple pill that the kids took (versus getting stuck as is the case with IV therapy), with minimal toxicity in spite of high dosages, and within days of taking it – it helped reduce fevers, chills and pain that some of the kids were previously experiencing. Awesome.

The research team, led by Yaël Mossé, MD from the Children’s Hospital of Philly (CHOP), explains that crizotinib appears to be effective in patients that test positive for the cancer causing gene, anaplastic lymphoma kinase (ALK). Crizotinib specifically looks to disrupt this gene and voilà – if all goes as planned, the cancer disappears. It’s all part of the personalized therapy approach that so many researchers are exploring these days and for good reason. Finding treatments that are effective in patients whose cancer has certain characteristics helps to create customized treatment plans that not only work, but also prevents kids from being subjected to other therapies or procedures that they know won’t work.

Crizotinib also showed promise in kids with specific forms of neuroblastoma that harbor the ALK gene. Neuroblastoma was the type of cancer that Alex had and although the tests for ALK were not available when she was in treatment, you better believe we would have looked into it if it was.

One more neat piece of info – Alex's Lemonade Stand Foundation (ALSF) had a role in this breakthrough! Although ALSF was not responsible for funding this particular clinical trial, we did provide previous support to the research team that allowed them to develop the trial. Dr. John Maris, one of the doctors who treated Alex at CHOP states it a bit more eloquently than me:

"Funding through ALSF was absolutely critical for the translation of our basic research findings to a clinical trial. It is a highly complex process (and often difficult to fund) to take a novel discovery and develop a safe and effective therapeutic strategy. ALSF funding allowed us to be extremely facile in getting the work done so that we could get a clinical trial open as soon as was humanly possible. While the actual trial was funded by the National Cancer Institute through the Children's Oncology Group, ALSF funding to CHOP to support core research infrastructure also enhanced our ability to bring children to our center from far and away for enrollment on the trial, and to receive the medication in a safe and very efficient manner."
      - John Maris, MD, Chief, Division of Oncology, and Director, Center for Childhood Cancer   Research at The Children’s Hospital of Philadelphia

So what happens now? Well, doctors are working hard to get crizotinib moved up to a front line treatment for kids with ALCL who present with the ALK gene, and the researchers are planning a larger scale trial for these patients as well as trials to further investigate the drug’s efficacy in kids with neuroblastoma. 

 

It’s news like this that energizes me and the work that we do every day at ALSF – I’m sure the amazing researchers who work tirelessly to make this their life’s work feel similarly. Progress is being made, we are making a difference (thanks to your support) and kids’ lives are being saved. Awesome.

-Jay Scott (Alex’s Dad)

Guest blog: Swoop from the Philadelphia Eagles

You didn’t know an eagle could blog, did you? It may not be football season at the moment, but it doesn’t mean I’ve flown the coop! I’m gearing up for a great summer pre-season where I’ll do my best to add some fun to all of the hard work of the players (rookies and veterans alike), not to mention do some training of my own to work on my wingspan for the upcoming season.

That being said, one of the best parts about my job is interacting with the fans – primarily the kids that come out to games. I think any of my colleagues would agree that the kids are so much fun and bring such a great energy to any game.

That’s why one of my favorite events in the off-season is the Camp In for Kids’ Cancer that we host to benefit Alex's Lemonade Stand Foundation. That’s right – kids and their families actually get to sleepover at Lincoln Financial Field and hang out on the field! For those of you who have ever been on a tour of an NFL Stadium, you know this is a big deal. Usually, access on the field is strictly limited to the players (and me of course!), but at the Camp In you can have a catch on the field, attempt to punt the ball through the uprights or just pretend it’s a Sunday afternoon in December and your name is being chanted in the stands! I’ll be there as well as Eagles cheerleaders and even current players from the Philadelphia Eagles!

You’ll also get a behind the scenes tour of the stadium and get to hang out in the Eagles’ locker room. Don’t worry – we’ll air it out before you get there. Then we’ll set up your special tents (I’ll help), eat dinner, watch movies, play games and so much more.

The coolest thing about the Camp In is that all of the money raised from the event goes to Alex’s Lemonade Stand Foundation and the fight against childhood cancer. We need to make sure doctors keep finding better treatments for kids with cancer so that they get to experience things like going to an NFL game or even just having a catch with their mom or dad in their own backyard.

If you choose to fundraise for the event, you can get extra stuff including shirts, sweatshirts and memorabilia or even the chance to play video games on the Jumbotron with an Eagles player, an autograph session with Eagles players and the opportunity to set up your tent and sleep on actual the field.

Please, join me on May 19-20! There are still some tents available so sign up today before they’re gone. Also, there are a limited number of dinner tickets that were just released if you can’t spend the night with us. You still get to play on the field, meet players and of course – eat!  It’s also an awesome idea for a Father’s Day, graduation or anytime gift if you’re looking to make some memories with your family as well as help kids with cancer.