Childhood Cancer

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Rhabdoid Tumor

Rhabdoid tumor is a rare tumor that commonly starts in the kidneys, but can also begin in the liver or other soft tissues of the body. It can also begin in the brain, where it is known as AT/RT. The disease can spread to other parts of the body.  Rhabdoid tumors are most often diagnosed in infants and toddlers.

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December 3, 2018
Meet Eden: Keeping Her Faith While Fighting Cancer

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
Drafting the Map to Cures: Introducing the ALSF Crazy 8 Initiative 

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.
 

October 16, 2018
Ten Facts You Need To Know About Childhood Cancer

by Trish Adkins

Alex’s Lemonade Stand Foundation (ALSF) has declared a war on childhood cancer.

Every day of every month of every year, the equivalent of a classroom of children is diagnosed with cancer in the United States—36 sons, daughters, brothers and sisters—all facing the fight of their lives. 

ALSF has worked to find cures—and has already made incredible strides in improving standards of care, increasing the number of childhood cancer clinical trials, helping families access cutting-edge treatments and funding breakthroughs like CAR T cell immunotherapy. Until there are cures for all children, more work must be done.

Here are 10 facts you need to know about the war on childhood cancer:

1. Children are dying.

Childhood cancer is the leading cause of death by disease for children in the United States. One in five children diagnosed with cancer will die within five years. And every year, an estimated 80,000 children die from childhood cancer around the world. 

2. The deadliest of all childhood cancers are brain tumors.

Brain tumors bumped leukemia out of the top spot in 2016. This isn’t because brain tumors are harder to treat, but because research has made enormous progress in treating several types of pediatric leukemia. 

3. Childhood cancer is biologically different than adult cancers.

Even though they share the same name, childhood and adult cancers do not necessarily share the same treatment protocol. 

4. Traveling for treatment can leave families with impossible choices.

The average cost of one hospital stay for a child with cancer is $40,000—five-times more than the cost of hospitalization for other pediatric health issues. Add another cost of traveling for treatment and families can be left choosing between putting gas in their tank and food on their table. In 2017, the ALSF Travel for Care program helped over 500 families access treatment by funding over 300 flights, 1,000 nights of lodging and 820,000 miles in gas cards.

5. Just 4-percent of the federal budget for cancer research is allocated towards children.

Imagine being told you can only eat 4% of your meal. Or you can only have 4% of your paycheck each week. For cures to become a reality, private research funding, from organizations such as ALSF, is required. 

6. The number of cures that researchers are searching for is infinite.

Childhood cancer is not just one disease or even a dozen diseases—there are hundreds of subtypes. Researchers are searching for genetic targets within tumors and then developing and matching drugs to attack those targets, making cures a reality.

7. Big data could hold one of the keys to cures.

As researchers continue to discover targeted therapies, they can turn to data for assistance. The Childhood Cancer Data Lab, funded by ALSF, provides researchers with faster, easier access to the wealth of childhood cancer data available.

 8. It’s not just cures we need. We also need safer treatments.

Seventy-five percent of childhood cancer survivors are left with serious side effects for the remainder of their lives. Late effects of childhood cancer treatment affect organ and tissue function, growth and development, learning and memory and psychological adjustment. Treatment can also leave survivors at a higher risk of secondary cancers.

9. Accelerating the rate of clinical trials is key to accelerating cures.

Clinical trials provide two important functions: providing scientists with data and offering hope to children battling relapsed cancer. Clinical trials are expensive and time-consuming—but through the ALSF Infrastructure and Center of Excellence grant programs, institutions can access funds that support and speed up the establishment of clinical trials. 

10. Innovative collaboration among researchers will lead to cures.

The childhood cancer research community is working together to find cures. Through the ALSF Crazy 8 Initiative—a groundbreaking effort to build a roadmap to cures—researchers are working in a coordinated effort to ensure childhood cancer is just a memory. 

Learn more about how ALSF is funding breakthroughs and finding cures for childhood cancer and get more childhood cancer facts here. 


 

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Featured Hero

Eden Green

At age 10, Eden was diagnosed with a cancer type no doctor had ever seen. They crafted a treatment plan that made her cancer-free, but two years later she relapsed. Now 13, Eden is enrolled in an ALSF-funded clinical trial to try and cure her disease.
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