Alex’s Lemonade Stand Foundation worries about federal cuts to childhood cancer research

Alex’s Lemonade Stand Foundation has been receiving emails and calls every week from cancer researchers who lost federal grants this spring.

The Bala Cynwyd-based charity started 20 years ago after a girl with cancer dreamed up a front-yard fundraiser to help support her doctors’ research. Alex Scott’s vision has inspired people around the world to raise millions of dollars to fill gaps in funding for childhood cancer research.

Now her mission is seeing even more demand, after President Donald Trump’s administration terminated and paused hundreds of millions of dollars’ worth of cancer-related grants.

The foundation, ALSF, run by Alex’s parents, has noticed a 100% increase in applications for one of their grants for newly independent scientists, and a 38% uptick in applications for their grant supporting bench-to-bedside scientific translation. Researchers have also reached out individually, wondering if the foundation could help offset some of their losses.

However, ALSF has long been designed to supplement federal funding, not replace it.

“What we do is impossible without the federal government’s funding,” said Liz Scott, ALSF’s co-executive director and Alex’s mom.

Over the last two decades, ALSF has raised more than $350 million for over 1,500 research projects across 150 different institutions.

They’re especially interested in science that wouldn’t otherwise easily get funding, such as early-stage, innovative ideas that don’t yet have enough preliminary data for federal grants.

The foundation is pushing “extra hard” to raise money this year in hopes of filling some of the shortfalls caused by recent cuts, she said.

So far, they’ve raised around $30 million.

Scott and her husband started ALSF in 2005 after their 8-year-old daughter, Alex, died from a cancer called neuroblastoma.

Alex had been diagnosed with the cancer — which starts in immature nerve cells called neuroblasts — two days before her first birthday, and went on to spend 2½ years receiving treatments that failed to help her “incurable diagnosis,” Scott said.

At that point, she had cancer in her bones, as high as her shoulders, down to her toes.

The family left their home in Connecticut to receive an experimental treatment at Children’s Hospital of Philadelphia, which ended up reducing her cancer by about 70%.

Prior to entering the clinical trial, Alex had been on morphine. The treatment offered relief.

“Her pain was gone,” Scott said.

A month later, Alex started talking about hosting her own lemonade stand.

She wanted to raise money to give her doctors, “so they can help kids the way they helped me,” Scott recalled 4-year-old Alex saying.

During her first stand in 2000, in West Hartford, Conn., Alex managed to raise $2,000 in a day. The next year, her family permanently relocated to the Philadelphia area to be closer to CHOP.

Alex kept hosting her lemonade stand every year in her front yard, this time bringing in tens of thousands of dollars.

At the same time, Alex continued battling her cancer.

By 2004, she was “very sick,” Scott recalled. The 8-year-old’s treatments stopped working, and experimental therapies failed to help.

Alex decided that she wanted to raise $1 million. She said it would be possible if everyone held lemonade stands.

In the last year of her life, Alex saw that goal met.

People all over the U.S., and in Canada and France, held lemonade stands alongside her, in what would be the first “Lemonade Days,” an annual campaign where people set up lemonade stands in June to raise money for childhood cancer research.

This year, there were 13,301 stands — an 18% increase compared to 2024.

Until her daughter passed, Scott hadn’t thought much about what Alex’s efforts could become.

However, she knew that Alex would have wanted to make an impact on all childhood cancers, not just her own.

Scott recalled telling her daughter that they were planning to keep giving the money they raised to CHOP to study her cancer. But Alex thought that was selfish.

“All kids want their tumors to go away,” Scott recalled her daughter saying.

That set the vision for what ALSF is today.

“We’ve really been able to come in and fill a gap that has existed for a long time,” Scott said.

One of the projects they’re most proud to have funded happened at CHOP.

Physician-scientist Yael Mossé was interested in testing out a new treatment, called an ALK inhibitor, which blocks the anaplastic lymphoma kinase protein to help stop cancer cells from spreading. It was already being used for lung cancer.

Mossé wanted to see how it would work in children with a particular form of neuroblastoma.

“We had no funding for this at that time,” she said.

That’s when ALSF stepped in to provide funding for Mossé to gather data and launch a clinical trial.

Her team found that some children with the inherited form of neuroblastoma responded well to the drug and were able to go into remission. Edie Gilger, for example, was treated at 2 years old and is now 16 and cancer-free.

“She would have died without the opportunity for us to learn about ALK and to have an inhibitor,” Mossé said.

That work led to another trial in 2017, also supported in part by ALSF, that found an even better ALK inhibitor, which was effective in more children.

The Scott family would later learn, after sequencing Alex’s tumor, that her cancer fell into the category of neuroblastomas that could have been helped by that second drug.

Mossé believes Alex could’ve gone into remission.

“She didn’t set out to cure her own cancer, but the fact that we were able to find something that would have helped her was really pretty special for us,” Scott said.

When the Scott family first started the foundation, one of the biggest concerns they heard was the difficulty recruiting people to the field.

“Because childhood cancer is underfunded, we weren’t attracting enough people to study it,” Scott said.

Academic researchers largely rely on grants to grow their lab and pay for part of their salary. There aren’t as many funding opportunities in pediatric cancer compared to other research areas, making it a seemingly riskier venture for young people planning careers.

ALSF has responded by creating the Young Investigator Grant, specifically intended for early-career scientists. The idea is that the foundation provides these scientists with their first grant, which they can then leverage into a larger grant from the government, the major funder of research in the U.S.

“We’re trying to show them that there is opportunity, and that organizations like ours can step in and fund them and bring them into this world,” Scott said.

They’ve so far funded about 300 young researchers.

However, cuts to federal funding disrupt that system, Scott said.

She worries they will lose talented scientists to the private sector, or that these young people might instead decide to pursue an area of research that’s “better funded than cancer is at the moment,” she added.

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At the beginning of February, when cuts started being rolled out, ALSF decided it would try to double the number of young investigators it funded.

Usually, the foundation funds between 10 and 13 new young investigators each year. This year, they funded 20.

Still, they worry about the cuts they can’t replace.

The Pediatric Brain Tumor Consortium, for example, had to halt enrollment in trials after learning that it would no longer receive government funding.

Scott grieves for the families whose children have relapsed and need a clinical trial.

“It’s absolutely devastating to think that they’re not going to have that option,” she said.

Scott pointed out that the Trump administration has pushed to cap funding for indirect costs, which usually cover overhead expenses such as rent, utilities, maintenance, and administrative support. At the University of Pennsylvania, the proposed 15% cap would reduce yearly funding for medical research by $240 million. The rate cap has been blocked by court order for now.

ALSF’s grants don’t cover indirect costs, meaning they count on federal funding to support that aspect of research.

Scott is hopeful Alex’s legacy can still make a difference, even in this funding landscape. But she emphasized they can’t do it alone.

“Alex’s is in a unique position to be able to fill some of these shortfalls in the budget cuts, but we’ve got to raise more money to do that,” she added.