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Alex's Lemonade Stand Foundation Blog

Zach (pictured above, at age 10) battled a hard-to-treat type of lymphoma.

by Trish Adkins

Childhood lymphoma arises from the immune system cells and occurs when those cells grow in an uncontrolled and uncoordinated way. While it shares some similarities with leukemia, lymphoma often settles in the lymph nodes of the body, instead of in the bloodstream.

Each type of lymphoma is named by its cell of origin and this dictates treatment protocol. The good news: the most common types of lymphoma (Hodgkin, Non-Hodgkin, Burkitt) have relatively high cure rates as compared to other types of childhood cancer.  

The bad news: cure rates are not 100-percent and even those children who are cured of primary lymphoma can face a lifetime of side effects including cardiac dysfunction and even secondary cancers. 

But, there is hope on the horizon. Alex’s Lemonade Stand Foundation (ALSF) funded researchers so they could continue to search for safer treatments and cures for children battling lymphoma. Meet some of these childhood cancer heroes and the researchers making a difference every day:

Miracle Cure: Zach

When Zach was 5 years old, he was diagnosed with anaplastic large cell lymphoma (ALCL), an extremely rare type of non-Hodgkin lymphoma. While still in treatment, Zach’s lymphoma relapsed. As Zach became sicker and his prognosis worsened, his parents felt they were out of options. Traditional chemotherapy was not working and, in fact, was making Zach sicker. Zach was running out of time. 

Zach’s lymphoma tested positive for ALK, an abnormal gene that fuels certain types of cancer. ALSF-funded research made a clinical trial for a new drug possible, bringing hope to his family. This drug, known as crizotinib, targets and turns off the ALK gene. Days after taking the drug, Zach was feeling better and his cancer was disappearing. 

Now Zach is 12 years old and cancer-free. 

Breakthrough Research: Dr. Yael Mosse, Children’s Hospital of Philadelphia 

Funded by an ALSF Reach grant, Dr. Yael Mosse led the research team at Children’s Hospital of Philadelphia that made Zach’s treatment possible. Her team theorized that since crizotinib worked in ALK-positive lung cancer in adults, it could be the hope children battling ALK-positive cancer needed. 

And since crizotinib is a targeted therapy that just attacks one gene, it has fewer side effects as compared to chemotherapy. 

Dr. Mosse’s clinical trial enrolled 30 children--including Zach. Zach was seven out of the eight children with the same type of lymphoma that received the same miraculous cure. The trial also tested crizotinib in children battling ALK-positive neuroblastoma with successful results. 

Hero (and Boss Lady) Sydnie 

The day Sydnie, age 13, was diagnosed with Hodgkin lymphoma she cried for a moment and then decided no one else was allowed to cry in front of her.

Then, Sydnie asked her mom to dye her blonde hair purple, pink and blue—because she knew she was going to lose it anyway. When she lost her hair as a result of chemotherapy, she wanted to shave her head right away because, as Sydnie, declared, cancer was not going to determine if she was bald or not. It was up to her.

“I won’t let cancer be the boss of me,” Sydnie said. 

Hodgkin lymphoma has a relatively high cure rate (80-90% in most cases) but requires immediate chemotherapy and radiation. Sydnie endured nine months of chemotherapy and 10 days of radiation. 

Today, she is cancer-free.
 
Translating Research into Treatments: Dr. Helen Heslop, Baylor College of Medicine 

Dr. Helen Heslop, a researcher at Baylor College of Medicine (an ALSF Center of Excellence) and Texas Children's Hospital focuses her work on translational research, which combines testing in the lab with patient studies. This type of research can help accelerate new therapies to clinical trials and someday, as new standards of care. Of particular interest to Dr. Heslop is how immunotherapy treatments, like CAR T cell immunotherapy, could help children with hard-to-treat lymphoma and also lead to safer frontline treatments. 
 
“The grants that ALSF provides support early career research, innovative, high-risk ideas and early phase trials that are critical for clinicians and scientists as they test approaches to improve outcomes,” said Dr. Heslop. 
 
Learn about lymphoma research and meet more childhood cancer heroes, here

by Adam Paris, ALSF

When childhood cancer hero Quinn Clarke started Kick-It, he thought of it as a way to bring his community together to support childhood cancer research by hosting charity kickball games. Now, millions of dollars later, Kick-It has expanded well beyond kickball to include any sport with ALSF games. Now, everyone can join the fight and help fund cures for childhood cancer.

Whether you love kickball, pickleball, dodgeball or any game in between, you can help! The key is fundraising before the game gets rolling. 

Here are a few ways supporters have made their events successful:

1. Empowering students to fundraise

One of the best ways to get started is by letting students lead the way! Their creative ideas can catalyze the community to pitch in, whether it’s through a car wash, lemonade stand or bake sale. Maria Schneider, a teacher at Broadview Heights Middle School, even had students organize their own vendor system, where they can sell baked goods, crafts or anything else to fellow classmates during the school day to raise funds. You will be amazed how much kids can raise. 

2. Offering sponsorship slots on custom t-shirts

Maria Schneider’s school also creates a custom t-shirt every year, with three designs created by the students. Then, they send out sponsorship letters to local businesses asking if they want to submit a donation to have their name or logo on the back. It gives everyone something to remember the event and can raise plenty of money in the process. 

3. Organizing a remarkable raffle

Jeremy and his colleague Steve at KeyBank organize their company kickball game every year. People were paying the donation to play, but their fundraising flatlined a bit. They wanted to incentivize players to up those numbers, so they decided to ask local businesses for raffle prizes. Top fundraisers on each team got a prize, anything from dinner and drinks at a local brewery to movie tickets and ice cream. Reach out to businesses for potential prizes your participants can’t resist winning. 

4. Holding a pancake breakfast or community dinner

Deana Harb is the mom of a childhood cancer hero and a longtime Kick-It organizer. All year, her local Applebee’s offers to open its doors for community breakfasts. All they needed to do was sell tickets for $10 dollars and they got 60% of the profits for their event. It was as simple as that. Once they had student volunteers signed up, that flapjack fundraiser got them off to a great start. See if any local restaurants would be willing to kick in a percentage of their day’s profits or let you take over for a community meal!

5. Asking for a minimum donation to play (and bring pizza)

Before getting people invested in fundraising, the first step for Jeremy at KeyBank is signing up participants with an added slice of incentive. A local pizza parlor donated pies for them to have at their sign-up table during lunchtime, so a hungry passerby can’t help but wander over to their table. Everyone who signs up pays a minimum donation and gets a slice of pizza while they’re at it. Those dollars get them started before the real fundraising starts.

Setting up games in your local park or rec center is easy and people of all ages can participate! Get started today. If you want any additional fundraising ideas, check out these tips you can use before game day. 

Kick-It, formerly a program of Flashes of Hope, is a national charitable athletic campaign to raise money for much-needed childhood cancer research. Kick-It partnered with Alex’s Lemonade Stand Foundation (ALSF) in 2017 in order to further the vision of a 10-year-old boy with cancer who wanted to help other kids like him. This partnership emerged from their similar beginnings as both charities were founded by children battling cancer. Learn more here.

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Fundraising Ideas
Exosomes could hold the key to improving outcomes in patients with Ewing’s sarcoma.

Dr. Glenson Samuel with Malina Cole, one of his patients. Malina volunteered to be part of a study looking for biomarkers for Ewing's sarcoma.

Exosomes could hold the key to improving outcomes in patients with Ewing’s sarcoma. 

by Trish Adkins, ALSF 

Thirty years ago, scientists discovered small particles floating outside of cells called exosomes. These particles were thought to be cellular garbage cans that served to clean up any waste produced by cells. But now, researchers, like ALSF Young Investigator Grantee Glenson Samuel, MD of Children’s Mercy Kansas City, are working to understand how exosomes could hold the key to improving outcomes in patients battling Ewing’s sarcoma, a type of childhood cancer typically arising in the bones of the body. 

Understanding Exosomes
Exosomes are far from garbage cans—in fact, exosomes are communication and coordination powerhouses. These little particles are released from cells in the body and then move around orchestrating the growth and survival of tumor cells. Exosomes can help make one part of the body more hospitable to cancer cell growth by encouraging an increase in blood supply. Exosomes can also help cancer cells cloak themselves from the body’s immune system.

Because they are‘mini-me’ versions of the cell of origin, exosomes can also be a great source of a disease’s biomarkers. Exosomes are detectable through a simple blood test and can be used by oncologists to monitor the presence, growth or death of cancer cells.  

In the case of Ewing’s sarcoma, Dr. Samuel discovered that the exosomes present in the blood of patients with confirmed cases of the disease by biopsy contained specific markers that are only present in Ewing’s sarcoma cancer cells. 

Critical Discovery
Dr. Samuel’s discovery gives doctors another leg up on Ewing’s sarcoma treatment and has the potential to allow for better diagnostics, treatment customization and long-term monitoring. The overall goal of this discovery would be to use this biomarker during therapy to help doctors see when a treatment is working (there would be less exosomes in the blood) or not working (there would be more exosomes in the blood).

After treatment, this biomarker test could be used to detect recurrence of disease before cancer cells may appear on a MRI scan. Since testing for the biomarker requires just 1/20 of a teaspoon of blood, it is non-invasive and relatively easy to add to a child’s routine clinic visit.

In the future, the biomarker test could make the initial diagnosis of Ewing’s sarcoma faster and potentially help doctors avoid the need for invasive biopsies. 

“There is also the potential to apply what we are learning here to other types of pediatric sarcomas,” said Dr. Samuel. 

Patients Powering Progress
Dr. Samuel’s research was made possible, in part, by funding from ALSF. But the real heroes of his research were the patients willing to donate a little extra blood during their clinic appointments. 

One childhood cancer hero, Malina Cole, was diagnosed with Ewing’s sarcoma when she was just over a year old. Her parents were told about Dr. Samuel’s study and immediately decided to sign on. All Malina had to do was give one extra vial of blood at each clinic visit with her usual blood tests during her regularly scheduled clinic visits. Dr. Samuel is using Malina's samples and samples from several other kids seen at Children’s Mercy to study the presence of Ewing’s sarcoma biomarkers during and after their treatment. In Malina’s case, the standard treatment protocol of surgery, chemotherapy and radiation has worked. Today, she is 5 years old and is cancer-free. 

With the help of these children battling Ewing’s sarcoma, Dr. Samuel proved that his biomarker test for Ewing’s sarcoma worked—paving the way for a May 2017 NIH grant that Dr. Samuel and his colleagues at the University of Kansas Cancer Center (Andrew K. Godwin, PhD and Yong Zeng, PhD) will use to develop a microfluidic chip that can check for the presence of Ewing’s sarcoma-derived exosomes in the blood. This chip has the potential to enable results to be ready within a few hours, giving doctors invaluable time to make treatment decisions and save lives. 

ALSF funds research to finds cures for all types of childhood cancer. Read more about Ewing’s sarcoma research here.

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