Welcome to the PAC2 Childhood Cancer Advocacy Interview Series!
Today we are honored to talk with
Jay Scott, the founder of Alex's Lemonade Stand Foundation. May 1% of us achieve what he and Liz have in the next 10 years. With the utmost respect, Mr. Jay Scott.....1. Jay, we know that your daughter Alex has been and continues to be a wonderful inspiration for you and so many others working to cure childhood cancer one cup at a time. But for those not familiar, would you give us a history of ALSF?
Alex’s Lemonade Stand first began in 2000, when Alex was 4 years old and a cancer patient. Alex voiced a simple wish - she wanted to hold a lemonade stand to raise money to help "her doctors" find a cure for all kids with cancer. The idea was put into action when Alex held her very first lemonade stand on our front lawn in July of that same year. For the next four years, despite her deteriorating health, Alex held an annual lemonade stand to raise money for childhood cancer research. Alex raised a great deal of money through her annual stands, but in the early months of 2004, she set what to some seemed like an unreachable goal – Alex wanted to raise $1 million. Though her health was failing, Alex was determined to reach her goal, and when her Liz and I asked how she would do it, she just said – “if people all around the country hold lemonade stands and send in their money, I think I can do it.” Alex was right, and during the weekend of her last lemonade stand in her neighborhood, thousands of volunteers of all ages from all corners of the country held lemonade stands, propelling Alex and her cause to reach $1 million. Shortly following, on August 1, 2004 Alex ultimately lost her life to childhood cancer, but her legacy of hope continues to live on through volunteers young and old.
2. How and why did you come to the decision to dedicate 100 percent of your time to the Foundation?
Since Alex held her first front yard lemonade stand Alex’s Lemonade Stand Foundation has raised over $30 million, with nearly half of the funds originating from lemonade stands like Alex’s. The money raised has been utilized to fund over 125 cutting-edge research projects, create a travel program to assist families who need to travel for treatment, and develop educational resources to help everyone touched by childhood cancer.
I never had any intention of making childhood cancer my career. Before 2005, ALSF was part of another foundation. As it grew, it became apparent that we could not continue to be part of this foundation. ALSF became a stand alone organization in 2005. At our first board meeting, the board members asked “who is running the foundation?” Liz and I told them that we were, at night and on the weekends. The board felt that we needed a fulltime staff to grow the organization. At the time I had a very good job and had no intention of leaving it. Liz convinced me that we were not ready to hire someone else to run ALSF yet and that we only had one chance to get The Foundation off the ground. It was not an easy decision, but Liz is very convincing…..I left my job a few months later.
3. Alex’s provides so many unique and innovative opportunities to participate in childhood cancer advocacy. We find the Young Investigators Program especially interesting. Can you explain that Program and why it is so vital to the future of childhood cancer research?
We agree that having a Young Investigator program is very important. We provide seed funding to these researchers so that they can get preliminary data and turn this into bigger funding from the government. A big problem in childhood cancer research is that young investigators have a hard time getting this early funding. If it is too difficult to get their research careers off the ground, then many will leave research and go into a “clinical only” career path. It is so important to give these young researchers hope so that they can dedicate the rest of their careers to finding better treatments for our kids. We believe so strongly in this that we recently added, “A” Awards which are large $125,000/ year young investigator grants for very promising scientists. We are also getting ready to add some grants for medical students so that we can get them interested in childhood cancer research even earlier.
4. How does ALSF select what research is funded and what promising research results the Foundation has seen from those grants?
In our grant program, we fund through a peer review process. We have a Scientific Advisory Board and about 40 reviewers. Each grant is initially reviewed by at least two reviewers. After the initial review, the top 50% of grants are discussed and scored by a team of 8-12 reviewers. After that, the scores are averaged and the best scoring grants are funded. Even though I am not a scientist, watching them work during the whole review process is an amazing experience.
We have had some very exciting results come out of our grant program. One Young Investigator who turned our $60,000 investment into a $750,000 government grant. Another Innovation Award grantee used his preliminary data from ALSF funding to win an award from the Howard Hughes Medical Institute worth $1.5 million and this scientist came from outside childhood cancer. We have also had a lot of success with our Program Infrastructure grants speeding up access to earlier stage clinical trials.
5. We think that achieving awareness outside of the childhood cancer community is a vital step to the success of overall future funding efforts. Obviously, holding a Lemonade Stand achieves this goal.What other events does ALSF offer that reach outside of the childhood cancer community to increase awareness.
ALSF purposely has a wide variety of events that appeal to diverse groups. In addition to our lemonade stands happening at a wide variety of locations; we have formal events like The Lemon Ball, we have the Great Chefs Event, for athletes we have Team Lemon (our endurance athlete program), a number of Walk/Runs, and softball tournaments. We try to have events that will appeal to all age groups also.
In addition to this we also think it is important to get researchers from outside the childhood cancer world to apply their science to our childhood cancer problems. This is why we raise awareness in the scientific community and encourage scientists from outside childhood cancer to apply for our grants. We have had some very exciting results from these projects.
6. ALSF started in the mid-2000’s and has raised over $30 million for research into childhood cancer. Can you give us your view from 30,000 feet on the state of the childhood cancer advocacy/funding raising world and what changes you have seen in the past several years?
We have seen many changes in the world of childhood cancer in general since we were brought into this world in 1997. I think the way the internet has spread over the last 5-10 years it makes it much easier to connect people with a cause on a grassroots level. Just look at what PAC2 has done. I have also seen the launch of many new non-profits that have a focus of childhood cancer over the last 5-10 years. I hope that all of these great childhood cancer organizations will some day make a joint show of strength to let everyone know that we are not satisfied with the level of funding for childhood cancer.
7. We’ve talked about the organization Childhood Cancer Charities Unite, or C3U. Can you explain this organization to our readers?
C3U arose out of a couple of meetings that were held in Philadelphia starting back in 2008. ALSF invited 25 childhood cancer organizations to see if there were some ways we could collaborate together. We have been working together to develop a web site that will help us to not duplicate funding efforts and keep a birds eye view on the state of research projects and funding. We also want to work together on some awareness efforts in the future.
8. What are the biggest challenges we face in increasing awareness and funding?
Most people don’t realize how big of a problem childhood cancer is. In many parts of the developing world, treatment for childhood cancer is totally unavailable. We all need to do a better job of letting people know that childhood cancer still exists. We also need to do a better job of letting people know that too many of our survivors have life long side effects from their cancers and treatments. We also need to share the personal stories of these kids and their families. If we can get the public emotionally attached to childhood cancer then more funding will follow.
9. Where you see ALSF in 2 years and in 10 years?
As ALSF continues to grow, we will serve childhood cancer patients and their families, childhood cancer researchers, and the support staff in many ways. In addition to funding research, which will lead to better and novel treatments, we will also continue to help families. Whether it is families that need to travel for treatment, we will help them through our Travel Fund and educating childhood cancer families about their diseases and survivor issues . We will also continue to collaborate with other childhood cancer organizations.
Within 10 years I want to see new, curative, less toxic, targeted therapies. We will also have raised $100 million more and put this to good use. I don’t want to see other kids and families go through what our family went through with Alex.
10. Outside of our readers working directly with ALSF (which we highly recommend!), what two specific suggestions would you make for us all to become more effective advocates for childhood cancer?
Everyone can make a difference. Alex proved that to me. Tell one person today about the problem of childhood cancer, better yet tell 10 people today about childhood cancer. If everyone on PAC2 did this today that would be over 40,000 people learning about childhood cancer today.
Thank you Jay and Alex's Lemonade Stand,
And, if you need more about the kind of people they are at Alex's Lemonade Stand - from Dec. 2008.
A lot of times its not about how many letters or comments you make in a day. Sometimes priorities overtake getting signatures on a petition. Take yesterday.....
Aimee's Mom Annette
was stuck. Aimee
was home, and not feeling good. Annette couldn't leave her. But, Aimee's dog Lazy was arriving at the Philly airport, and HAD to be picked up, or else it was doggy jail. Aimee, shown here with Mr. B (who reportedly was unconcerned about the entire incident), was bumming and wanted Lazy.....if it's not one thing.......
So what to do? Dari
and others dive into action. Blogs, posts, messages to the Big Apple Group. E-mails overload servers east of the Mississippi! ANYBODY! Please help! Suggestions come in...."I will chip in for a limo for the dog!", "I can go in the morning"......etc. PAC2 people caring for PAC2 people. People caring for people...
Jay chimes in. Claims to be "on crutches" (JK)...... but let me ask Liz. "Can the dog co-exist with other dogs and cats for a day LOL?" Apparently so. Liz dropped whatever she was up to, gets the dog, who spends a restful night with the other animals.
"Lazy" the dog was re-united with Aimee, much to her delight.
On behalf of Aimee, Annette and the rest of us, many thanks to Dari and the other PAC2ers who got this done. And I would personally like to thank both Jay and Liz Scott
, the founders of Alex's Lemonade Stand Foundation
, who took a break from selling lemonade to make sure Aimee and Lazy were able to play.
a reason to join a geo group
and host a Lemonade Stand, huh?