Guest blog: Childhood Cancer Hero Hope Bertelsen

I stepped off the train that day without knowing at all what to expect. I didn't know who was going to meet me or what I was going to do once I got to Alex's Lemonade Stand Foundation (ALSF) offices; I didn't even know what the Wynnewood train station was going to look like! I won't lie - I was feeling a bit nervous. But more than that, I was feeling excited. I was really looking forward to this.

Back in January, I had attended the Lemon Ball and bid on one of the auction prizes: a two-week internship with the Foundation. My experience with ALSF dates back years ago, to when I was first diagnosed with Stage IV Neuroblastoma in 2003 at the age of 12. My treatments took me to Children's Hospital of Philadelphia (CHOP), the same hospital that Alex Scott went to, to get treatment for the same disease. I heard all about her then, and knew immediately that I wanted to help too. Since then, I've become a Hero Ambassador, speaking at events to share my story and hers. In doing so, I've gotten to meet some of the people who work at the Foundation, and I've always been amazed and inspired by what they do every day to help others just like me. I wanted a chance to see more of that, and this auction prize gave me exactly that. Somehow, I won that auction, and immediately began making arrangements for it to happen. I live in New Jersey, an hour away from the ALSF office, so I made plans to stay with a friend at UPenn for the 2 weeks I'd be interning. I figured out train schedules to take me to Wynnewood from University City. I communicated with people at ALSF to finalize plans. I set the date. In March, I would be standing on a platform at the Wynnewood train station!

So there I was, Monday morning, extremely excited and not knowing at all what to expect. The very first person I met was Cindy, who had come to pick me up from the train station; the very first thing I noticed about her was that she was wearing a pair of green leopard print clogs...and immediately I felt completely comfortable. This was going to be a fantastic two weeks. 

That day, I learned how the next two weeks would go. I would arrive in the morning, learn who I was working with for that day, and then spend the day helping that person out with whatever they might need. This way, I got to meet everyone in the office, and I got to learn how every piece of the Foundation was run - from the fundraisers to the computer systems to the grants processes, every piece was important and essential for making ALSF so special. 

For the next two weeks, I input data, came up with ideas for fundraisers, helped with a new website that would act as a resource for families of childhood cancer patients, created videos for social media, made phone calls thanking donors for their support, made graphics and spoke at a meeting for a large upcoming event. I learned a lot about how an organization is run; but more than that, I learned why Alex's Lemonade Stand Foundation is as extraordinary as it is, and it has everything to do with the people who work there. They all truly believe in what they are doing, and are still affected by every story they hear. No matter how long they have been there, or how many kids with cancer they have met, they still treat everyone as an individual, and seek to help with all those individual problems that make everyone unique. My own story, for instance, is quite a bit different than the ones they normally deal with. 

I was diagnosed at an age that was actually considered old for the kind of cancer I have, and I have been fighting it for over 9 years now. I have had to learn how to deal with the side effects of it, and of my medications, while going through high school, college and beyond. There aren't too many others like me, but Alex's Lemonade Stand Foundation still wants to help me. They have listened to my individual needs, they have heard my voice and worked to help me and others like me by bringing in more resources for teenagers with cancer. When I go to their events, they call me afterwards and ask me what they can do next time. They truly care. And every day, when I walked into those offices for my internship, I was greeted with smiles and a bright, "Good morning!" I always felt comfortable, and I always felt valued. You don't get many experiences like that. For that, I will always be grateful, and I will always be here, willing to help.

 - Hope Bertelsen

Jay Scott: Zebrafish, MicroRNA and ALSF...oh my!

You hear us saying all the time how the funds you help us raise are supporting innovative research projects searching for a cure – and they truly are! Just in the last week we received notice that two projects that we funded have been published in prestigious medical journals demonstrating their significance not just to us – but to the medical community as a whole. Right up there with the clinical findings is the feedback we receive from the grantees about the impact that your support makes possible. Check it out…

“Without ALSF's support we would not even be close to this discovery. Now because of your funds we are publishing the findings in Blood. The technician I was able to hire is absolutely fabulous and continues to make very nice progress on target identification.” - Nikolaus Trede, MD, PhD

Nikolaus Trede, MD, PhD, a researcher at the Huntsman Cancer Institute was awarded ALSF funding looking at a new treatment for T-cell acute lymphocytic leukemia (T-ALL), a particularly hard to treat type of childhood cancer. Dr. Trede proposed to test the treatment in zebrafish. Why zebrafish? Well, little known fact to us non-scientists, but apparently zebrafish’s genomes and immune systems are similar in many ways to those of humans and they can easily mimic human cancers. The targeted treatment that the research team tested, Lenaldekar (LDK), was successful in treating the zebrafish with T-ALL and even showed promise in slowing the disease in mice. This is even more exciting because since LDK targets the cancer cells (not the healthy cells as with existing chemotherapy treatments) the treatment is significantly less toxic. You can read more about Dr. Trede’s study that was published in last week’s issue of Blood (which is also posted on our website).

“This work would not be possible without the support of ALSF! I am so grateful to you guys!” – Rami I. Aqeilan, PhD

Rami I. Aqeilan, PhD of The Ohio State University also received funding from ALSF for a project that was looking at osteosarcoma, the most common type of bone cancer and a leading cause of cancer death in adolescents. Dr. Aqeilan and his team identified (for the first time) a MicroRNA signature reflecting the development of the disease. What does this mean? Well, the researchers found that the level of expression of specific MicroRNAs directly correlated to whether a tumor developed into metastatic disease or was more likely to be responsive to therapy. I like to think of it as uncovering a recipe of sorts. You need certain amounts of specific ingredients to end up with a cookie. Too much of one thing and too little of another and it won’t all come together. Of course, in this case – that cookie is an osteosarcoma tumor, but you get my gist. By identifying this MicroRNA “recipe”, the researchers can better predict who might benefit most from specific treatments. In addition, their findings may help lead to more targeted treatments so desperately needed for kids battling the disease. You can read more about this study in the April 2012 issue of Cancer Research (also posted on our website).

So, yes – your support and efforts on behalf of ALSF are making a significant and meaningful difference in the lives of children with cancer. Thank you, as always, for helping to make sure zebrafish and MicroRNA are a part of our vocabulary!

-Jay Scott, Alex’s Dad