Childhood Cancer

Neuroblastoma

Neuroblastoma is a type of childhood cancer that most commonly originates in the adrenal glands, but can also develop in the nerve tissues in the neck, chest, abdomen or pelvis. It is the most common extracranial solid tumor cancer in childhood and the most common cancer infancy. Neuroblastoma is divided into three risk categories: low, intermediate and high risk. 

Latest Neuroblastoma grants

Andras Heczey, MD & Leonid Metelitsa, MD/PhD, Principal Investigator
Baylor College of Medicine
Bio-Therapeutic Impact Award, Awarded 2017
Sharon Diskin, PhD, Principal Investigator
The Children's Hospital of Philadelphia
Innovation Grants, Awarded 2017
Susan Cohn, MD & Chuan He PhD, Principal Investigator
University of Chicago
Innovation Grants, Awarded 2017

Latest Neuroblastoma blog posts

December 6, 2017

After three years of treatment for neuroblastoma, Elijah Talley had exhausted options at his hometown hospital. Diagnosed when he was just 4 years old, Elijah went through the endless cycle of treatment and relapse, again and again. Conventional treatments, which included high dose chemotherapy, radiation and a stem cell transplant, failed.

Neuroblastoma, the most common type of extra-cranial solid tumor in children, can range from benign to malignant. Advances in targeted therapies have made some cases of neuroblastoma easier to treat; while other cases are still tricky. When frontline treatment fails and children like Elijah relapse, clinical trials represent the best hope for remission and survival.

But, clinical trials are often far from home. For the Talleys, “far” meant a 1200 mile journey to Philadelphia. 

The family found a clinical trial at Children’s Hospital of Philadelphia (CHOP), led by Dr. John Maris, a member of the ALSF Scientific Advisory Board. On the eve of their third trip to Philadelphia in less than three months, Elijah was unable to fly because of his condition. The only way to get Elijah to treatment would be an expensive and time-consuming road trip.

“The sad reality is the challenges that come with traveling so far often making it impossible for families. The expenses are incredibly overwhelming—especially when most families like ours are already in great financial distress,” said Dawn Talley, Elijah’s mother. 

The similarities between Elijah and ALSF founder Alex Scott's stories led the Talley's to the ALSF website.  Both battled neuroblastoma. Both relapsed. Both needed to travel for treatment.  

Working with their hospital social worker, the Talleys used the ALSF Travel for Care program to help with travel expenses to and from Philadelphia. Dawn even recalls a time when the family was stranded in Chicago overnight because of weather. She had $13 in her wallet. 

“Our social worker made the call to ALSF and within minutes, the staff reserved a hotel room that not only had a free airport shuttle but also had a complimentary breakfast,” said Dawn. 

Elijah had been traveling back and forth from Little Rock to Philadelphia for nine years and hosting ALSF lemonade stands for 11 years. Elijah still has neuroblastoma—but the treatments guided by Dr. Maris and his neuroblastoma team at CHOP continue to offer hope. 

The Talley's have never given up on Elijah, now 17, and ALSF will never give up funding research to help ensure kids like him receive the potentially lifesaving treatment they need.​

“I know that we would go to the ends of the world to save our son. I also know that we couldn’t get there without help,” said Dawn. 

YOUR CONTINUED SUPPORT is why children like Elijah and his family have hope and are able to receive potentially lifesaving treatments to fight childhood cancer.  

YOU ARE THE REASON why Alex’s Lemonade Stand Foundation has been able to continue to fund researchers around the country to develop new treatments and cures for childhood cancer. 

YOUR GENEROUS GIFT helps fund the most promising, innovative scientific projects with the greatest likelihood of making an impact.

THANK YOU!

November 24, 2017

by Jay Scott, Alex’s Dad

In 2013, I shared some words of wisdom from my daughter. Now, four years later, these words are even truer and more powerful. Keep reading to see why we all believe in miracles at Alex’s Lemonade Stand Foundation and how you can help this Giving Tuesday

When Alex was 6 or 7, my wife, Liz, overheard a discussion between her and her older brother Patrick. Alex asked Patrick if he believed in miracles. 

Patrick, always the thinker, took pause, and instead of awaiting his reply, Alex simply piped in and said — “I do, I mean I could wake up one day and my cancer could be gone, that would be a miracle.”

Alex was right: she had battled cancer since before the age of one, and at the time of her death in 2004, she hadn’t been cancer-free since diagnosis. Had her cancer disappeared, it certainly would have been a miracle. But I’m not here to tell you about a miracle that saved my daughter’s life; instead, I’m here to tell you about the miracle that was her life, and how her 8 ½ years of life have left an enduring impact on the lives of other children battling cancer.

Many of you have heard the story about Alex’s first surgery on her first birthday that left her without feeling in her legs and how she willed herself to walk despite it all. Some would call that a miracle. You may have also heard that after receiving a treatment that made her feel better, 4-year-old Alex became determined to help doctors find cures through a front-yard lemonade stand. Alex would raise more than $1 million in her lifetime; that could be considered a miracle too. 

For me, the true miracle is that what Alex started in our front yard continues to make a difference today, 13 years after she lost her own life to the disease. Through Alex’s determination to help others, she got her miracle, in the form of being a part of the cures for others.

You may recall the story of Edie Gilger. Like Alex, Edie was diagnosed with stage IV neuroblastoma before she was a year old. Despite aggressive treatment, Edie’s cancer persisted. She was quickly running out of options for a cure. 

However, researchers at Children’s Hospital of Philadelphia were enrolling children in a clinical trial designed to treat children with a specific abnormal gene called “anaplastic lymphoma kinase” (ALK). ALK drives the development of cancer. Edie was ALK-positive and she was enrolled in the trial. 

Doctors used a drug called crizotinib, which was already FDA-approved to treat lung cancer in adults. Crizotinib turns off the ALK gene and in turn, stops cancerous cells from multiplying. When crizotinib is effective, cancer disappears. 

For Edie, that is exactly what happened. Edie is now 8 years old. Instead of spending her days in the hospital, Edie is in second grade and loves dancing, gymnastics and playing the ukulele. Edie does not have lingering side effects from her treatment. 

Edie is cancer-free. 

For Edie, through research that was funded by the Foundation my daughter started, her miracle happened: she woke up one day and her cancer was gone.

This is just one story of one child with one specific type of cancer. But this breakthrough continues to make the difference for other children who are ALK-positive. And it continues to spur researchers forward as they look for custom, precision treatments driven by the genetic makeup of the cancers that children are battling. 

As we get ready to turn the page on yet another year, the words of my daughter reverberate in my mind; miracles are possible through hard work and determination. We are making progress finding better treatments and cures for all kids with cancer, but we have such a long way to go. Alex knew how powerful hope was. We shouldn’t stand in its way. She believed that she would get her miracle, and although it wasn’t the cure she had dreamed of for herself, her vision of helping others has been fulfilled.

I hope wherever you are and however you helped in the fight against childhood cancer, you will continue to do so for years to come, day in and day out. After all, as Albert Einstein said:

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”

How you can help this Giving Tuesday
As Alex's supporters, you exemplify the spirit of giving miracles throughout the year. Whether it's during Alex's Lemonade Days, Alex's Million Mile or any ALSF event, your compassion is bringing us closer to a cure every day. Now, we have something big planned for the most generous day of the year, Giving Tuesday, and you can be a part of it!

We're asking dedicated members of Team Alex to set up a Facebook fundraising page to support Alex's Lemonade Stand Foundation this Giving Tuesday. Even if you have not created a Facebook fundraiser before, we have all the resources you need to get started. 

Watch this video for an easy tutorial on how to set up your page. 

Once your Facebook fundraising page is set to support Alex's Lemonade Stand Foundation, all you have to do is share the page on November 28th on Facebook and encourage everyone to give! Think of it as a virtual lemonade stand and you will be amazed how impactful your fundraiser can be. 

And if you want to simply donate, just head to our Facebook page and make a Giving Tuesday donation there! 

Together, we can make a huge difference by providing more funds and awareness for kids fighting cancer everywhere.

November 10, 2017

After three years of treatment for neuroblastoma, Elijah Talley had exhausted options at his hometown hospital in Little Rock, Arkansas. Diagnosed when he was just 4 years old, Elijah went through the endless cycle of treatment and relapse, again and again. Conventional treatments, which included high dose chemotherapy, radiation and a stem cell transplant, failed.

Neuroblastoma, the most common type of extra-cranial solid tumor in children, can range from benign to malignant. Advances in targeted therapies have made some cases of neuroblastoma easier to treat; while other cases are still tricky. When frontline treatment fails and children like Elijah relapse, clinical trials represent the best hope for remission and survival.

But, clinical trials are often far from home. For the Talleys, “far” meant a 1200 mile journey to Philadelphia. 

The family found a clinical trial at the Children’s Hospital of Philadelphia (CHOP), led by Dr. John Maris, a member of the ALSF Scientific Advisory Board. On the eve of their third trip to Philadelphia in less than three months, Elijah was unable to fly because of his treatment and condition. The only way to get Elijah to treatment would be an expensive and time-consuming road trip.

“The sad reality is the challenges that come with traveling so far often make it impossible for families. The expenses are incredibly overwhelming—especially when most families like ours are already in great financial distress,” said Dawn Talley, Elijah’s mother. 

The Talleys found Alex’s Lemonade Stand Foundation because of the story of our founder Alex’s battle with neuroblastoma.

Working with their hospital social worker, the Talleys used the ALSF Travel for Care program to help with travel expenses to and from Philadelphia. Dawn even recalls a time when the family was stranded in Chicago overnight because of weather. She had $13 in her wallet. 

“Our social worker made the call to ALSF and within minutes, the staff reserved a hotel room that not only had a free airport shuttle but also had a complimentary breakfast,” said Dawn. 

Elijah had been traveling back and forth from Little Rock to Philadelphia for nine years and hosting ALSF lemonade stands for 11 years. Elijah still has neuroblastoma—but the treatments guided by Dr. Maris and his neuroblastoma team at CHOP continue to offer hope. 

“I know that we would go to the ends of the world to save our son. I also know that we couldn’t get there without help,” said Dawn. 

Read more about Elijah and his hero story here.

About Travel for Care
Open to all institutions in the U.S. and Canada,  Alex’s Lemonade Stand Foundation’s Travel for Care program offers assistance to families who face the need to travel for potentially lifesaving childhood cancer treatment. Assistance for transportation and lodging may be available to families who meet program guidelines and apply through a member of their medical team. 
Read more here.