Alex's Lemonade Stand Foundation Blog

By Jay Scott

It is no secret that crimes are being committed in the civil war unfolding in Syria, costing hundreds of thousands of lives to be lost. What started as peaceful protests to challenge the dictatorship of the country has unfolded into quite simply an all-out war with the government using violence to take control, and civilians fighting back in the same manner. To date the conflict has killed more than 140,000 people and created millions of refugees, nearly half of them children. As evidenced by these statistics, the conflict is certainly capable of taking lives, but add to that the necessity of medical treatment for civilians -- whether it is giving birth, dealing with a chronic illness, or receiving chemotherapy -- and the conflict is becoming life-threatening in other ways too.

I know that I may be oversimplifying what is happening in Syria, and I am as horrified as any of you by the extreme violence that has taken place for far too long, but when I read a story about a young child battling cancer in the war-torn country, I couldn't help but realize how the basic essentials of life are being denied to the people of Syria. What would have been a life threatening and life altering illness has sadly become a death sentence for those affected.

The story that I am referring to was recently published in Timemagazine, and detailed 4-year-old Zacharia Delly's battle against childhood cancer. Zacharia was diagnosed with neuroblastoma last year, the very same cancer that my daughter Alex fought. As with many childhood neuroblastoma fighters, Zacharia was recommended a course of chemotherapy, but with the hospital near his home having been destroyed, he and his mother would have to travel two hours by bus for his treatment. They made it there for Zacharia's first treatment, and with his doctors pleased with his response, were scheduled to head back two weeks later. They wouldn't make it. The road in which they would have to travel was dangerous, and one in which Zacharia's mom feared would be unsafe.

Zacharia's family, like so many others before them, eventually fled the country, landing in Lebanon to seek treatment there. Though they had already overcome so many obstacles, they would face many more there, including being turned away from privately-run hospitals and finally learning that the delay of treatment would be too much for Zacharia. On Monday, March 17, Zacharia died, caught between a civil war and cancer, with a life too shortly lived.

Clearly, the inaccessibility to health care in Syria is only adding to the death toll of the war. A country that was once envied for its government-funded healthcare system is now only a shell of that, with 60 percent of its hospitals destroyed or damaged, and many doctors exiting the country as swiftly as everyone else. Childhood cancer aside, even if I'm biased on the topic, I read a story of a mother leaving a hospital against medical advice with her less than one day old infant due to sheer fear of what staying would mean. I don't know how that story ended, but I can only hope that it was not in the same manner of Zacharia.

I mourn for Zacharia and empathize with the questions his family must be facing -- could we have done more? But the truth in this conflict is that his family and millions of others have been left without a choice, they are paralyzed by fear. What is the answer here in a country that continues to deteriorate? The Timemagazine article cited a figure that since the start of the conflict 200,000 Syrians have died from illness due to a lack of access to treatment and drugs. When will this stop, and how will the country rebuild? I don't have the answers, but I know something has to be done, for Zacharia and for all the lives that are being lost. I can only hope that through the reading of this article others will come to be aware of the injustices that are taking place in Syria. I think many of us are aware of the fighting and conflict, but perhaps we aren't as aware of the consequences that this fighting has led to. I don't know when this will end, but I do know, especially now after reading the story of Zacharia, that something must be done to save the lives of children, the most valuable asset to a bright future in the war-torn country.

Originally posted on the Huffington Post, March 25, 2014
By Jay Scott

UPDATE: The Chimerix pharmaceutical company answered a desperate family's pleas on Tuesday and said it will provide 7-year-old Josh Hardy with cancer medication that could help save his life, CNN reported. Josh will be the first patient in a new trial set to start Wednesday. 

By now, you have heard the story of young Josh Hardy, a 7-year-old childhood cancer survivor who is fighting for his life against a viral infection. A small drug company in North Carolina (Chimerix) has a medication, Brincidofovir, in clinical trial that fights off viral infections similar to Josh's, but have made the choice to refuse access to what may be the only hope to save Josh's life. This has angered people everywhere (including me) and left us to ask the fundamental question - if a drug exists that can save the life of a child, why is that access being denied?

First it is important to understand what compassionate use is, it is the use of medications that have not been approved by the FDA, but are in earlier stages of development and are allowed to be provided to patients when circumstances call for it. I would say that saving the life of a young child who has already battled cancer four times, should be among those circumstances. In fact, I think that preference should be given to children in compassionate use, but clearly that is not what is happening here. So why is this drug being withheld from Josh?

Is it money? The company behind this drug reports that each compassionate case would cost them $50,000, money that the small company does not have. More than this financial limitation, green-lighting a case like Josh's would take the manpower of all the company's employees, likely contributing to the end of their compassionate use program two years ago. As many of us who are following this story learned as we woke up today, there have been offers to pay the $50,000 for Josh, but those too have been denied.

Is it the principle? When asked by the media about the withholding of this medication, the president of Chimerix, Kenneth Moch (who has vocally proclaimed that he too is a parent) has said that while he is heartbroken, saying yes to Josh's case would essentially open the floodgates to all who apply for compassionate use. He followed that up by saying that if his child had an aggressive adenovirus like Josh, he'd be fighting tooth and nail too. It's no secret that a parent would and should fight to save the life of their child, but I have a sneaking suspicion that should the situation be reversed, Josh's parents would provide access to the drug to save Kenneth Moch's children.

Would compassionate use create a black mark on the drug? More than money and principle, compassionate use has the ability to make a drug look bad in the long run. Of course it goes without saying that those in need of these drugs for compassionate use are in dire situations, and that they may very likely die without the use of the drugs. Chimerix would have to report any poor outcome to the FDA when it applies to market the drug, including those of compassionate use.

Knowing all sides of this case, and even as a biased parent whose daughter lost her life to cancer, when you have the ability to save a child's life, you do it, no matter what. To me, and many people out there, the answer is simple, if you can afford it or not, if you have to go against your principles or not, whether there are consequences to reputation or not, you do whatever is necessary to save the life of a child. Period.

My daughter Alex was on many medications under compassionate use. While they may not have ultimately saved her life, they certainly provided her with more quality time, time to hold her lemonade stands and make a difference in the lives of others. If she would not have had access to these drugs, who knows where we would be now, perhaps not funding millions of dollars of research annually to find better treatments and cures for the very disease that has left Josh fighting for his life.

I understand that this company owes their investors a return on their money, but in the end, we are all human beings, and we owe it to these children to share this potentially lifesaving drug. No matter the obstacles in the way, when a child's life is on the line, you do what you have to. I hope that the president of Chimerix reconsiders, whatever that may mean in the long run - Josh deserves to be given the chance to grow up and it seems to me that through the simple release of Brincidofovir that is completely within the realm of possibility. Let's not let a policy or financial implications come before doing the right thing.

The blog post above was originally posted on the Huffington Post Impact blog on Monday, March, 2014.

Fresh off the Oscars buzz from earlier this week, we have some pretty exciting news about one of our most prestigious awards/grants, the ‘A’ Award. 

Back in 2009, we introduced the ‘A’ Award for young researchers as a way to jumpstart the careers of young scientists in the pediatric cancer field. Despite the possible impact that new ideas from these young scientists may ultimately have on children with cancer, these researchers conveyed to us that it’s a challenge to get funding for their projects. We believe that young researchers are integral components of finding new treatments and cures in the childhood cancer world and by providing support for their research these investigators will utilize their talents toward pediatric oncology. Hence, the ‘A’ Award was born. Since it was introduced, we’ve funded 15 of these important ‘A’ Awards and are thrilled to report that they’re helping to make important findings. 
Todd Druley, MD, PhD

Ok, so back to the exciting news…one of our first ‘A’ Award recipients, Todd Druley, MD, PhD, from Washington University in St. Louis, recently discovered through his research that babies who develop leukemia during their first year of life appear to have inherited a genetic predisposition that can make them highly susceptible to the disease.

Unlike leukemia in older children, which can often be cured, infant leukemia is very rare and more difficult to cure. Doctors have been baffled why babies that are just a few months old can develop cancer since they have not lived long enough to accumulate a critical number of cancer-causing mutations. Dr. Druley’s research has shed a bit of light on this question. His findings indicate that babies appear to have inherited rare genetic variants from both parents that by themselves would not cause problems, but in combination put the infants at high risk of leukemia. 

So, now what? Dr. Druley wants to continue to study these inherited variations and learn more about how they can lead to leukemia. The hope is that it may be possible to use a technique called genetic editing to remove the harmful gene from the DNA of infants who are susceptible to leukemia, and replace it with a healthy version of the same gene, ultimately sparing babies and their families from a devastating diagnosis. Pretty great stuff. 

Projects like Dr. Druley’s are why it’s so important that we fund these research projects – this is the kind of work your support and donations are helping to make possible. Thank you!

Read more about this research project:
Published in the journal Leukemiaread the full article

Dan and Mom Jody at The Lemon Ball.
We are deeply saddened as one of our long time childhood cancer heroes, Dan Hammond, passed away last Thursday, February 20. Dan wasn't just a childhood cancer hero, he was a young adult hero as well. After being diagnosed at age 9, Dan fought "the beast" - what he nicknamed his cancer - for 12 years. His connection to ALSF is very personal, he was one of the fortunate heroes to have actually met Alex Scott as they were being treated in the hospital at the same time. Since that first meeting, Dan became a steadfast supporter of ALSF and brightened so many events with his endearing personality, which was a unique and refreshing blend of sincerity and humor.

Dan garnered the support of people across the country most recently when a social media campaign had everyone from sports stars to actors posting photos with the phrase, "Dan's Our Man." Christian Bale even wrote the phrase on his face to pledge his support.

It's stories like this that not only sadden us, but also motivate, inspire and quite simply anger us, that this devastating disease continues to take the lives of incredible people like Dan. We need to find cures - now.

Dan, you are the man.

Aaah, love is in the air this time of year and depending where you live, so is snow, sleet and rain as this winter continues to pound us with precipitation. In any case, whether you look forward to Valentine’s Day or count the minutes until February 15 – we encourage you to do something meaningful this year to show your love not only for your loved ones, but also for kids with cancer.

We love this creative gift that put lots of smiles on the faces of some of our childhood cancer heroes recently…baseball players, Clint Robinson of the Los Angeles Dodgers and Danny Otero of the Oakland Athletics, donated credit they had with New Balance to treat some of our childhood cancer heroes with new sneakers! Some photos of our heroes with their new "kicks" are below:

Alexander Nobles, in treatment for
rhabdomyosarcoma, showing off his
new blue sneaks.
Brielle Barber, in treatment for anaplastic glioma astrocytoma,
giving the thumbs up on her new pink and gray sneakers.

Haylee Hanes, a brain tumor survivor, after wearing her
new sneakers to softball practice.

For the rest of us non-professional athletes  - we’ve included a few ideas below to spread the love this year:

  • Procrastinators, we’ve got you covered! Instead of spending $100 on flowers destined to wilt or dinner at a crowded restaurant, make a tax-deductible online donation to ALSF in your sweetheart’s name. A donation of $100 funds two hours of important childhood cancer research.

  • How about a brand new, 2015 Volvo XC60? Just $25 buys you (or your loved one) the chance to win a new Volvo that we’re raffling off. Only 3,000 tickets are being sold (great odds) and all ticket proceeds benefit ALSF. The winning ticket will be drawn at Alex’s “Original” Lemonade Stand on June 7, but you don’t need to be at the event to win. Learn more.

  • The couple that runs together, stays together! Sign up to join Team Lemon during “The Love Run”in Philadelphia on March 30. Get your heart pumping and be a part of this inaugural event in the City of Brotherly Love.

  • Consider holding a Valentine’s Day themed lemonade stand. Serve pink lemonade or even hot chocolate if it’s chilly where you live. Or, pledge to show your love by signing up to hold a stand another time of the year, like National Lemonade Days (June 6-8).