Founded By A 4-Year-Old, This Nonprofit Is Her Incomparable Legacy
This post was originally produced for Forbes.
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Alex Scott, the second child and only daughter among four children, must have been born with the genes of a social entrepreneur. Her resilience and her perseverance are the hallmarks of almost all successful entrepreneurs.
Born prematurely in 1996, she manifested her fighting spirit immediately, defying the odds and quickly earning the right to leave the hospital. Her mother, Liz Scott, now 47, says it was a glimpse of what was to come.
Before her first birthday, Alex was diagnosed with neuroblastoma, a pediatric cancer. She would battle the cancer for the rest of her short life, about seven and a half more years.
Liz Scott says, “Everything they had they threw at her.” Ms. Scott says, Alex demonstrated extraordinary strength through it all. No matter what, she could “find the joy in the day.” When she had a bad day, she would find a way to get through it with grace.
Watch the full interview with Ms. Scott in the video player at the top of this article.
The doctors tried all the conventional therapies, chemo, radiation and surgery. Nothing worked.
They started experimental treatments. They tried Metaiodobenzylguanidine or MIBG therapy that allowed them to perform a stem cell transplant, which works much like a bone marrow transplant to boost the immune system after being obliterated except that they use the patient’s own stem cells.
Even before it was confirmed by the CAT scans, Alex told her parents the therapy was working. In January of 2000, she told her mom she wanted to do a lemonade stand. Given the weather in Connecticut at that time of year—not to mention everything else going on in the complicated lives of a young family with a cancer patient—her mom put her off.
In June, Alex, now four and half years old, says, “I still haven’t had my stand.”
Annoyed, her mother asked, “Alex, what do you want to buy so badly that you need to have this lemonade stand?”
“I’m not keeping the money; I’m giving it to my doctors so they can help kids the way they helped me.”
And so, Alex’s Lemonade Stand was born.
Volunteers working at an Alex’s Lemonade Stand
By the time she was six, she’d raised about $30,000. Her parents were giving the money to fund neuroblastoma research to find a cure for Alex’s cancer.
When Alex found out, she said, “That is so selfish.”
“I wanted to say, ‘I don’t care!’ because I wanted a cure for my daughter,” Ms. Scott says.
Before she could get the words out, Alex said, “All kids want their cancer to go away. We should be giving money to all hospitals for all kinds of cancer.” That statement has defined the nonprofit’s vision ever since.
Alex’s Lemonade Stand Foundation has now funded research on 25 different pediatric cancers. Researchers apply for grants that are reviewed and scored by scientists. The projects with the best scores get funded, Ms. Scott says.
Toward the end of her life, Alex knew the treatments had stopped working. She was going to have one last stand and thought if everybody helps, if everybody has lemonade stands on the same day as hers, we could raise $1 million. “She held on to see that goal met,” her mother says.
“She died knowing that she had done this and had accomplished this seemingly insurmountable goal and number,” she adds.
After Alex passed away, the Scotts weren’t sure they would continue the fundraising effort. Alex really was the driving force.
But other people kept supporting the cause. “That put wind in our sails,” she says. Other families were reaching out for help and companies were signaling a willingness to help.
“How could you walk away from the opportunity to help other children?” With that thought, the work of the foundation did continue. Ms. Scott and her husband Jay Scott are the co-executive directors.
Ms. Scott confesses, “When Alex said she was going to cure cancer with the lemonade stand, honestly, I thought it was cute and I was proud. I didn’t think it would make a big difference in the world of fighting cancer.”
That isn’t what happened. Big progress has been made, especially over the past ten years. She says she regularly hears from parents now who say, my child is in remission for one year, two years, three years. It is “indescribable” to think that Alex’s life has had that effect.
Ms. Scott remains personally connected to the families of children with cancer even as the organization grows in scale and impact. “It’s both inspiring and really hard because a lot of them do really well. And some of them don’t.”
Applebee’s partnered with the Foundation beginning in 2005. This year, the restaurant chain raised $1.3 million for Alex’s Lemonade Stand.
“Each year, more and more of our franchise partners and restaurants join our campaign with Alex’s, allowing us to make even more of an impact in many of our Applebee’s neighborhoods across the country, uniting team members and guests with a common goal of curing childhood cancers,” said John Cywinski, president, Applebee’s.
Franchisee Diann Banaszek shared her story:
While this cause has always been important to me, it was brought home in 2012 when my grandson, C.J., was diagnosed with Chronic Myeloid Leukemia at the age of 11. As our family went through our own battle, we came to learn first-hand the enormous difference that ALSF has made in families’ lives. My grandson finally defeated his leukemia, but ultimately lost his life in 2014 from an infection that resulted from his treatment. Throughout his illness, he, like Alex, was passionate about doing anything he could to help kids like himself in the future. We continue their fight to see the end of childhood cancer in C.J.’s honor and are proud to have the Applebee’s family fighting alongside us.
Miriam Matz, the mother of eight-year-old cancer survivor Ellie Matz, shared a similar story:
When my daughter, Ellie was diagnosed with cancer, there were many long nights in the hospital those first few weeks. I was beyond exhausted but too anxious to sleep. I remember googling “Philadelphia” and “Childhood Cancer,” hoping to get a sense of whether there was a community or resources that I could be reaching out to. Alex’s Lemonade Stand Foundation immediately popped up, and I sent them an email. I was immediately contacted and offered both emotional and practical support, such as connections with other parents, a binder for organizing treatment and related information, and information about navigating the childhood cancer world. Early in our cancer life, our family decided that one way to survive and to hopefully make some meaning out of what we were going through, would be to get involved in helping raise money that could possibly help others. We’ve been lucky enough to be involved in ASLF ever since… being a part of that community has made us feel so much less lonely, and given us a tangible way to feel that we are contributing to help others.
Ellie’s cancer is the most common, meaning that there are several treatment options should the cancer return. Her mother points out that for families facing a rare cancer, there may be only one standard treatment—for some rare cancers, there are none.
It is for these families that Ms. Scott is most optimistic. She thinks curing cancer is realistic. Today’s progress is smart progress, she says. We’re looking at immunotherapies, targeted therapies and precision therapies or personalized medicine. “That’s how it’s going to become possible for every child to have the possibility of a cure.” For the cancers with no treatment and no cure today she predicts the greatest progress in the years to come.
As Alex’s mom reflects on her daughter’s life, she says, “She had to be one of the strongest people I have ever known.” She adds, punctuated by the sorrow only mothers who’ve buried their children know, “You have to remember to be grateful for what you have in your life every single day.”
Alex’s legacy is incomparable. Not only has the four-year-old founder’s organization gone on to raise over $150 million since she started selling lemonade in the front yard, the tally of lives saved and extended is just beginning. By the end of what should have been her natural lifespan in another 60 or 70 years, childhood cancer may be no more threatening than a cold—because she was a social entrepreneur.
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