At 10 years, Alex's Lemonade Stand still serves research funding

Edie Gilger, 5, with mother Emily. Edie, who had the type of cancer Alex Scott died from, is in remission, thanks to research funded by Alex's group.
Edie Gilger, 5, with mother Emily. Edie, who had the type of cancer Alex Scott died from, is in remission, thanks to research funded by Alex's group. (MICHAEL BRYANT / Staff Photographer)
Posted: June 05, 2014

Two young girls arrived at Children's Hospital of Philadelphia 11 years apart with the same kind of cancer.

One, 4-year-old Edie Gilger, lived to see her tumors shrink because of an innovative new drug therapy. Edie is in complete remission.

For that, she can thank the other girl, Alexandra Scott.

Ten years ago this month, Alex, weakened from cancer, sold lemonade for the last time at her Wynnewood elementary school. Lemonade stands were her way to raise money for doctors "to help other kids, like they helped me."

By the time Alex died that August, the Lower Merion Township girl had raised nearly $1 million and set in motion what would become an international effort.

Alex's Lemonade Stand Foundation for Childhood Cancer has since raised more than $80 million, funded more than 450 research projects, and played a role in the discovery of innovative therapies for children with cancer.

Researchers say the foundation has delivered key funding at a time when federal money is dwindling, helping to develop treatments that have shrunk tumors in some children, and helped further research into how a patient's own immune system might attack cancerous growths.

Once limited to a single full-time staff member, the nonprofit now employs 30 people at its lemon-colored Bala Cynwyd office, focused on the mission of eradicating childhood cancer "one cup at a time."

This weekend, more than 2,500 lemonade stands - including one at Alex's former school in Wynnewood - will crop up across the nation and in Canada for National Lemonade Days, organized annually by the foundation. The goal: to raise more than $1 million over the weekend for pediatric cancer research - to help more children the way Alex already has helped Edie.

"When a child is sick, you dream about some miraculous treatment," said Alex's father, Jay Scott, 45. "They got it, and we couldn't be happier."

A national spotlight

Alex started selling lemonade in 2000 on behalf of pediatric cancer research, when the family lived in West Hartford, Conn.

She had just undergone a stem-cell transplant to treat an often-fatal form of childhood cancer called neuroblastoma. In the hospital, Alex told her mother that she wanted to open a lemonade stand to raise money for doctors to help children with cancer.

The family moved in 2001 to Wynnewood, so that Alex could be treated at Children's. And her fund-raising mission continued.

The spring after Alex's death, the national attention increased when the Philadelphia-area owners of the thoroughbred racehorse Afleet Alex pledged a percentage of the horse's winnings to the cause. The horse won two prongs of the Triple Crown, the Preakness and the Belmont Stakes.

The charity's corporate sponsors and partners now include Northwestern Mutual, Toys R Us, Volvo Cars of North America, Applebee's, and Rita's Italian Ice.

In April, the charity announced it was acquiring SuperSibs!, a nonprofit that supports the siblings of children with cancer.

Over the years, the foundation has donated more than $9 million to Children's. Those contributions have helped renovate the hospital's outpatient clinic and have supported research that has led to significant advances in treatment, said Garrett Brodeur, former chief of the oncology division at CHOP and a member of the foundation's Scientific Advisory Board.

In 2008, Children's researchers John Maris (Alex's primary physician) and Yael Mosse, and Brodeur (who also treated Alex), identified abnormalities in a gene that causes neuroblastoma in some patients. In clinical trials, the doctors are treating the cancer with Crozotinib, a drug developed by Pfizer that blocks proteins made by the gene's instructions.

Without those discoveries, Nick and Emily Gilger fear what might have happened.

Tumors disappear

Their daughter Edie was diagnosed with neuroblastoma in 2009, when she was 6 months old. She underwent 12 rounds of chemotherapy and four surgeries in 15 months.

The Gilgers, who live in Lynchburg, Va., first heard about Alex during Edie's treatment at the University of Virginia Medical Center.

"But we didn't know a lot," said Nick Gilger, 34, an insurance broker.

Eventually, Edie's doctors suggested the family try an experimental therapy at Children's.

The Gilgers traveled to Philadelphia in 2011.

"We get here, and we see all the nurses wearing Alex's Lemonade Stand T-shirts," said Nick Gilger, "and we started researching."

Edie's physician, Mosse, began treating the youngster with Crozotinib. After 28 days of treatment, Edie's tumors were gone.

"And they haven't been back since," said her mother, 36, who runs an embroidery business from home.

Back in Lynchburg, the Gilgers hosted a lemonade stand. The family raised $4,500.

But their joy was soon tempered. Last month, Emily Gilger, seventh months pregnant, was diagnosed with neuroblastoma.

The family again traveled to Philadelphia. Emily gave birth May 6 to a son, Robert.

She is now undergoing treatment at Children's with the same experimental therapy with which her daughter is being treated. The foundation also arranged housing for the Gilgers.

"My family wouldn't be the family we are today without Alex's desire to start a lemonade stand and the foundation," Nick Gilger said in the hospital cafeteria as his curly-blond-haired daughter ate french fries.

"It's humbling," he said. "Sometimes, pride can get in the way, but when you are looking at these bills. ..."

Alex's parents, Jay and Liz Scott, work full time on the effort. They serve as co-executive directors, each collecting about $135,000 in compensation in 2012, according the nonprofit's tax records.

To avoid any conflict of interest, Liz Scott and board president Stephen L. Cohn say the charity has instituted checks and balances - including independent committees that make decisions without the Scotts.

The foundation is in the midst of a strategic-planning process to craft a blueprint for the charity's future, Cohn said.

The organization is examining how to guide growth, impact research, help children and families live more comfortably during treatment, and expand awareness of the organization.

Alex and her journey will always be irrevocably intertwined with that mission, Cohn said. They will continue to tell her story.

And they will sell lemonade.

On Saturday, Alex's parents and her three brothers - Patrick, Eddie, and Joey - will mark the 10th anniversary the way they observe every June. They will host a stand from 10 a.m. to 3 p.m. at Penn Wynne Elementary School.

"Alex's story is lots of [children's] stories," Liz Scott said. "She was the spark, and that will never be lost. But we shouldn't lose sight of the fact that we are here for the kids now - and the kids of the future."


BY THE NUMBERS

$80M

Amount raised by Alex's Lemonade Stand Foundation

for Childhood Cancer.

450

Number of research projects funded.

2,500

Number of lemonade stands, including one at Alex's school in Wynnewood, that will

crop up across the

United States and Canada this weekend.

$1M

Weekend fund-raising goal for pediatric-cancer research.


kholmes@phillynews.com

610-313-8211

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