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. 

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Latest Neuroblastoma grants

Mark Zimmerman, PhD, Principal Investigator
Dana-Farber Cancer Institute
Young Investigator Grants, Awarded 2018
Adam Durbin, PhD, Principal Investigator
Dana-Farber Cancer Institute
Young Investigator Grants, Awarded 2018
Andras Heczey, MD & Leonid Metelitsa, MD/PhD, Principal Investigator
Baylor College of Medicine
Bio-Therapeutic Impact Award, Awarded 2017

Latest Neuroblastoma blog posts

December 3, 2018

by Adam Paris

Eden is a 13 year old who loves to shoot photos and smile for her own snapshots. After being unable to walk or practice her favorite activity, dancing, for nearly a year, she was diagnosed at age 10 with a cancer no doctor had ever seen before. They tried standard chemotherapies for two different types of solid tumors similar to her cancer and after many months doctors deemed her cancer-free in March 2016.

Two years later, the cancer relapsed in her shoulder. Now, she and her tight-knit family continue to fight the cancer they named after her, Eden’s tumor, while waiting for a potential cure. 
As researchers learn more about Eden’s cancer, we wanted to give you a glimpse into Eden, the person. Check out our conversation below to learn more about this inspirational cancer fighter. 

ALSF: If you could have a superpower, what would it be and why?
Eden Green (EG): I would like to fly and be invisible. Flying is cool, but also scary. I like invisibility because I could hear conversations without being noticed in the other room. 

ALSF: What’s your go-to song to sing?
EG: I like to sing Francesca Battistelli. She’s a Christian artist so I sing her songs a lot, and then Lauren Daigle too. 

ALSF: I know you love taking photos! What do you like to photograph? 
EG: I like shooting nature a lot. I do a lot of flowers and nature shots and they turn out pretty good actually. 

ALSF: What is your favorite 2018 memory so far?
EG: My family went on a cruise in January. We went to Cozumel, Jamaica and Puerto Rico. I didn’t get to do as much this year because of my relapse. 

ALSF: What do you want to be when you grow up?
EG: It changes, but I kind of want to be a travel agent like my mom. I changed my mind from nursing because I don’t really want to do that anymore. Maybe a social worker at the hospital, but I don’t even know if I want to work at the hospital.

ALSF: What did you miss most while you were in treatment?
EG: I missed church, and we go to church a lot, so I missed going there. I like to see my friends and everything, so I didn’t get to see them really when I was diagnosed again. That was hard. I got to spend a little bit of my summer with my friends though, especially my one friend Rachel. She’s at my house like every day. I also missed going on trips that I was supposed to go on. 

ALSF: How has your family supported you?
EG: I don’t know, I’m asleep most of the time! My whole family is really funny though, but my dad he’s really funny. He’ll pull up things like the In My Feelings challenge videos to cops lip syncing stuff so he’ll watch those and start dying from laughter!
My sister Mya provides entertainment and my mom does too. Mom has to get her Fitbit steps in. When doctors come to help me I say, “Okay mom, you get your Fitbit steps in.”

ALSF: What does Mya do that helps you out? 
EG: She’s a competitive gymnast, so that helps me because I’m at the gym almost every day with her, watching their whole team. They practice every day for three hours. Most of the time before I relapsed, I was on the floor encouraging them during their routines. I actually got an award for being their team mascot. I’m like their group’s big sister because their siblings usually don’t come and watch them, so I’m always there. 

ALSF: What advice do you have for kids with cancer in the hospital?
EG: Stay strong and you’ll get through it. I’ve done it once and I’m doing it a second time so you can do it, I know you can. Keep having your faith and keep doing what you’re doing to help get through it.  

Our Q&A with Eden is the first in a series about her incredible story. Stay tuned next week for a discussion with her doctor, ALSF-funded researcher Dr. Jennifer Foster. 
 

YOU CAN MAKE A DIFFERENCE for children, like Eden, who want more opportunities to receive potentially lifesaving treatments and hope for a brighter, healthier future.

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

YOUR SUPPORT allows Alex’s Lemonade Stand Foundation to continue to fund researchers around the country to develop less-toxic treatments and more cures for kids with cancer.

DONATE, today. 

 

 


 

 

November 29, 2018

by Trish Adkins

In September, Alex’s Lemonade Stand Foundation (ALSF) called over 90 top scientists, pediatric oncologists and researchers from around the world to gather in Philadelphia to discuss the big question:

How can we cross the finish line and find cures for all children fighting cancer?

The meeting kicked off the Crazy 8 Initiative—ALSF’s commitment to identifying obstacles, knocking down roadblocks and developing a comprehensive, achievable plan to foster research, collaborate and accelerate cures for all children

For a long time, the childhood cancer world has focused on the major obstacle—lack of funding for research. Less than 4-percent of the federal cancer research budget is allocated to childhood cancers—requiring support from private foundations to make research possible. 

However, if money was no object, what else gets in the way of finding cures for the 36 children who are diagnosed with one of the hundreds of types of childhood cancer every day in the U.S.? 

That is what the 90 researchers participating in the Crazy 8 Initiative began to answer.

What is the Crazy 8?

“All of us in this room have a fire in our belly and a need to make things change,” said Dr. Nada  Jabado, of McGill University and co-chair of the Crazy 8 Initiative, at the opening session of the three-day meeting. 

The meeting consisted of working groups tackling one of eight areas of pressing concern in the pediatric oncology world. Six groups discussed hard-to-treat cancers—neuroblastoma, embryonal brain cancers, high grade gliomas, fusion positive sarcomas, fusion negative sarcomas and leukemia. The other two groups discussed umbrella topics that affect all types of childhood cancer treatment and research—the use of big data and the acceleration of clinical trials. 

Through small group discussions and full-session cross-topic talks, the researchers identified major obstacles to progress, most notably the need for more high-quality models for testing treatments as well as identifying more genetic drivers of cancer.

“Discovery and research are critical. While we make progress every day, we’ve probably discovered less than 1-percent of all targets,” said Dr. John Maris, of Children’s Hospital of Philadelphia and co-chair of the Crazy 8 Initiative. Dr. Maris is referring to the specific genes, mutations and other biological traits that make cancer develop and grow. By identifying those targets, doctors could match therapies that kill the drivers and in turn, stop the cancer. 

But, there is still work to be done to get there. Members of each working group are currently finalizing the first plan to tackle these eight areas. The phase one plans will be available in December 2018. Then specific grant projects will be developed for funding and ALSF can begin to follow the Crazy 8 roadmap straight toward the destination we all dream of: cures. 

Born from Alex’s Legacy. 
The idea for the Crazy 8 Initiative was born from the legacy ALSF founder Alexandra “Alex” Scott left for all of us. Alex was treated for neuroblastoma nearly her entire life. When one treatment left Alex feeling good for the first time that she could remember, she told her parents that she wanted to host a lemonade stand to help her hospital make other kids feel better, too. 

After that lemonade stand, Alex felt even more dedicated to helping kids like her. When her mother, Liz Scott, suggested that the money raised go toward neuroblastoma research, Alex replied: “But mom that would be selfish.”

Alex knew that all children needed cures. Her legacy compels ALSF to make that dream a reality. You can support the Crazy 8 Initiative and follow along here.
 

November 20, 2018

Three years into treatment for stage IV neuroblastoma, Eli was out of options. His cancer was not quitting; but neither was Eli.

His family and local team of doctors in Arkansas found out about some promising treatments available 1,200 miles away in Philadelphia. There was no hesitation: the family would make the trip. Eli enrolled in his first clinical trial, led by Dr. John Maris, an ALSF-funded researcher. The trip to Philadelphia was long and expensive; but the ALSF Travel for Care program was there to help.

Since that first trial, Eli has had both setbacks and successes. There are more options than were available 13 years ago when Eli was first diagnosed—and his family can imagine a world without childhood cancer. 

“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, Eli’s mom.

As Eli’s team works to find the best options for a cure, ALSF works to find more ways to fund the research that will lead to cures. We know cures happen when we all come together to give generously and allocate those gifts strategically to the most promising projects. 

“Discovery and research are critical. While we make progress every day, we’ve probably discovered less than 1-percent of all targets. We need to continue to accelerate the rate of discovery so kids like Eli have a shot at the cure they deserve,” said Dr. John Maris, Eli’s doctor. 

That’s where you come in. This Giving Tuesday, November 27, 2018, you can help Eli’s dream of a world without cancer come true. Simply donate here or host a fundraiser on your personal Facebook page (we’ve got all the how-to details here.)

In the meantime, keep reading. Eli shares his 13-years of cancer, in his own words:

When I was 4 years old in August 2005, I was diagnosed with stage IV neuroblastoma. Thirteen years later, I’m still fighting every day and I don’t intend on stopping any time soon. 

Since I was so young at diagnosis, I did not really know what was going on. All I knew was that I was going to the hospital so the doctors could look at me and figure out why my leg was hurting. After performing tons of tests and taking lots of blood, they told me that I was sick and had something called cancer. They also said that they were going to do everything they could to make me feel better and help me to not be sick anymore. I knew it was something serious—I could tell from my parents’ reactions. However, I didn’t fully grasp it until I was a few years older. 

When I was about 10 years old, six years after my initial diagnosis, I began to really understand what was happening. At this point, I had done many treatments in my hometown of Little Rock, Arkansas and many more at Children’s Hospital of Philadelphia. I had relapsed multiple times. While at the hospital, I started to think “Hey, I really would rather be with my friends right now,” or would dream of the day I got out of there and went back home. I began to see how my treatment not only affected me but affected my loved ones around me. I began to realize that none of my friends or the other kids went to the hospital nearly as much as me. Still, to this day, I struggle with finding my peers. 

But if there’s anything that came from my experience to be thankful for, it’s that it has made me look at my priorities and my life completely different than I think I would have otherwise. The state of my physical health is quite obvious and easy to determine. I spend more time analyzing my mental and emotional health, which is unfortunately less obvious and easy to determine. I’m also thankful for the opportunity to be part of all the research, trials and fundraisers that all contribute to finding cures and bringing awareness. 

I just started working here at Alex's Lemonade Stand Foundation and being in the office is eye-opening. The wonderful thing about bringing awareness and helping out is that anything and everything can make a difference. Whether it be telling a friend about ALSF, going to a fundraiser or donating something, all of that makes a huge difference in the big picture of things. It’s amazing to see the process of everything and see all the hard work that goes into trying to find cures.

ALSF has changed my life forever. It has helped me and my family in ways that I can never be thankful enough for. I hope that by bringing awareness and doing my part, I can help change another family’s life as well. 

About Eli Talley


Eli Talley is 17 years old and interns at ALSF. He was diagnosed with stage IV neuroblastoma in August of 2005. Originally from Little Rock, Arkansas, Eli now lives in Philadelphia. In his free time, he loves to write music, play guitar, watch movies and hang out with his friends.

 

How you can help TODAY:

This year is shaping up to be the biggest Giving Tuesday yet at Alex’s Lemonade Stand Foundation, and you can help take it over the top! We’re asking supporters to consider holding a Facebook fundraiser on November 27th to support the search for better treatments and cures on this day of generosity.
 
Even better, Country Time is generously matching all donations to Alex’s Lemonade Stand Foundation that day. That means every dollar will count double for kids fighting cancer. Sign up and learn more here.