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Alex's Lemonade Stand Foundation Blog

Elijah was diagnosed with neuroblastoma, the most common solid non-brain tumor in children, at just 4 years old. His diagnosis came in 2005, just a year after Alex Scott passed away. Elijah’s family repeated the difficult cycle of remission and relapse over the next three years.

Elijah, now 17, is battling relapsed neuroblastoma.

After three years of treatment for neuroblastoma, Elijah Talley had exhausted options at his hometown hospital. Diagnosed when he was just 4 years old, Elijah went through the endless cycle of treatment and relapse, again and again. Conventional treatments, which included high dose chemotherapy, radiation and a stem cell transplant, failed.

Neuroblastoma, the most common type of extra-cranial solid tumor in children, can range from benign to malignant. Advances in targeted therapies have made some cases of neuroblastoma easier to treat; while other cases are still tricky. When frontline treatment fails and children like Elijah relapse, clinical trials represent the best hope for remission and survival.

But, clinical trials are often far from home. For the Talleys, “far” meant a 1200 mile journey to Philadelphia. 

The family found a clinical trial at Children’s Hospital of Philadelphia (CHOP), led by Dr. John Maris, a member of the ALSF Scientific Advisory Board. On the eve of their third trip to Philadelphia in less than three months, Elijah was unable to fly because of his condition. The only way to get Elijah to treatment would be an expensive and time-consuming road trip.

“The sad reality is the challenges that come with traveling so far often making it impossible for families. The expenses are incredibly overwhelming—especially when most families like ours are already in great financial distress,” said Dawn Talley, Elijah’s mother. 

The similarities between Elijah and ALSF founder Alex Scott's stories led the Talley's to the ALSF website.  Both battled neuroblastoma. Both relapsed. Both needed to travel for treatment.  

Working with their hospital social worker, the Talleys used the ALSF Travel for Care program to help with travel expenses to and from Philadelphia. Dawn even recalls a time when the family was stranded in Chicago overnight because of weather. She had $13 in her wallet. 

“Our social worker made the call to ALSF and within minutes, the staff reserved a hotel room that not only had a free airport shuttle but also had a complimentary breakfast,” said Dawn. 

Elijah had been traveling back and forth from Little Rock to Philadelphia for nine years and hosting ALSF lemonade stands for 11 years. Elijah still has neuroblastoma—but the treatments guided by Dr. Maris and his neuroblastoma team at CHOP continue to offer hope. 

The Talley's have never given up on Elijah, now 17, and ALSF will never give up funding research to help ensure kids like him receive the potentially lifesaving treatment they need.​

“I know that we would go to the ends of the world to save our son. I also know that we couldn’t get there without help,” said Dawn. 

YOUR CONTINUED SUPPORT is why children like Elijah and his family have hope and are able to receive potentially lifesaving treatments to fight childhood cancer.  

YOU ARE THE REASON why Alex’s Lemonade Stand Foundation has been able to continue to fund researchers around the country to develop new treatments and cures for childhood cancer. 

YOUR GENEROUS GIFT helps fund the most promising, innovative scientific projects with the greatest likelihood of making an impact.

THANK YOU!

Categories: 
Research

SLA attendee Reilley Connelly with hero Brooke Mulford. Brooke inspired Reilley to get involved with ALSF and to stay involved. 

Reilley Connelly, a sophomore at Boston University, is a two-time ALSF Student Leadership Academy attendee. Reilley first discovered the Student Leadership Academy (SLA) as a junior in high school. Then last year, when the program opened to college freshmen, sophomores and juniors, Reilley applied again.

“Before the Student Leadership Academy, I had no idea how powerful one person could be to make a difference in the world,” said Reilley. Now, Reilley is taking the lessons she learned at the SLA to start a Lemon Club at her college and continue to fundraise for childhood cancer research.

The SLA is held each July at Villanova University outside of Philadelphia and attracts high school and college students from all over the world. Students learn about leadership, fundraising, childhood cancer research and gain valuable insights into how they can be change-makers in their community. This week-long experience includes an attendee-hosted lemonade stand.  

Reilley shared her experience with us. 

How has childhood cancer impacted your life?

Reilley Connelly (RC): Through my best friend, I met Brooke Mulford, who battled neuroblastoma and passed away this summer. The connection with Brooke was instant. She became such a big part of my life—she was someone my family talked about daily. Brooke and her mother, Amy, always shared the positive ways that ALSF impacted their lives. They introduced me to the Foundation and then I heard about the Student Leadership Academy and applied during my sophomore year.  Then, I met ALSF founder Alex Scott's family during the SLA and it was a huge eye-opener. ALSF does make a difference greater than any other cause I’ve encountered and now I can be a part of it. 

What was your first time at the Student Leadership Academy like?

RCI still talk to the other students I was with at Villanova. Just those few days together impacted me for a lifetime. We all held a lemonade stand at the end of the week and I was amazed at how much money we could raise—thousands of dollars in such a short time—to help fund childhood cancer research. I loved the experience of hosting a lemonade stand the most.

Why did you go back?

RC: I saw that there was a college program and thought what a great way to further my experience. I had also thought about starting a Lemon Club at my college. I knew that going to the Student Leadership Academy would give me the tools and knowledge I needed to make that happen.  Going back a second time; I had a whole new perspective. I was older and more of a young adult, who understood what was at stake and how important it is to support research for childhood cancer. This time we got to talk to researchers and see what the money goes to, which was really impactful. 

What lessons have you brought back to Boston University?

RC: The first time helped me understand more about what the Foundation does and what it is all about. I also learned how to fundraise and better understand the effort that goes into securing donations. Now when I see others fundraising for causes they care about, I understand the effort that goes into that. 

The second time helped me with my goal of starting a Lemon Club at Boston University. Our Lemon Club is officially approved at my school. We have lots of great plans to involve our large campus in fundraising for ALSF and to partner with other student groups, like fraternities and sororities. 

What’s next for you?

RC: I am excited to get the Lemon Club up and running at my school. I am also interested in working in the health/life science field because of my experience with ALSF. My major is business administration and I’d love to focus on applying a business background to that field. 

Since 2011, ALSF has trained 350 students, from 18 different states and 2 countries. The SLA attendees have also raised $33,953 for childhood cancer research, which funds 679 hours of research. For more information, please contact Gayla Carr at [email protected] or (610) 649-3034

Breakthroughs and cures for childhood cancer are only possible through comprehensive, cutting-edge research performed by the best minds in pediatric oncology. Each year, Alex’s Lemonade Stand Foundation (ALSF) provides grants to these oncology superstars—ensuring the future of research will mean safer treatments and more cures for children.

by Trish Adkins, ALSF

Breakthroughs and cures for childhood cancer are only possible through comprehensive, cutting-edge research performed by the best minds in pediatric oncology. Each year, Alex’s Lemonade Stand Foundation (ALSF) provides grants to these oncology superstars—ensuring the future of research will mean safer treatments and more cures for children.

Our grants program funds all phases of research—from early career and student research to clinical trial support—through 13 different grant programs. Each potential project is given careful consideration and review by our Scientific Advisory Board, made up of leading scientists and clinicians. 

Two research grant areas: The ‘A’ Award and the Bio-Therapeutic Impact Grant programs address the full spectrum of research providing funding for early and late-career scientists who are studying hard-to-treat, high-risk cancers. The 'A' Award is designed specifically for the early independent career scientist who wants to establish a career in pediatric oncology research. The Bio-Therapeutic Impact Grant accelerates a project closer to clinical trial, bringing promising treatments to children waiting for cures. 

Meet three of our latest grant recipients and find out how they are powering breakthroughs, one research project at a time:

Fighting Neuroblastoma with Natural Killer T-Cells: Andras Heczey, MD, Baylor College of Medicine 
Dr. Heczey, a 2017 ALSF Bio-Therapeutics Impact Grantee, is developing a novel form of cancer immunotherapy for children with neuroblastoma. His therapeutic will use Natural Killer T cells (NKTs) which are part of the immune system. Their presence and/or absence could have implications in the development of cancer. Dr. Heczey altered NKTs in the lab with the hopes that these newly engineered cells could lead to the development of NKT cell-based immunotherapy for neuroblastoma, as well as have an application for other types of childhood cancer. His funded research will accelerate NKT immunotherapy closer to the clinical trial stage. 

 

 

Targeting Synovial Sarcoma: Cigall Kadoch, PhD, Dana-Farber Cancer Institute 
Dr. Kadoch, a recipient of The ‘A’ Award, is studying the genetics of synovial sarcoma, an aggressive soft-tissue malignancy that is largely resistant to conventional chemotherapy-based treatments. Synovial sarcomas all share a common chromosomal translocation—a genetic event in which two proteins abnormally fuse together in the DNA. The result is the development of abnormal cells. Dr. Kadoch will study this genetic phenomenon, work to understand the underlying mechanisms that cause it to happen and provide insights on how this translocation could be refused, with the aim of eventually developing highly-targeted drugs that can stop synovial sarcoma. 

 

 

Unpackng Leukemia: Andrew Lane, MD/PhD of Dana-Farber Cancer Institute 
Dr. Lane, a current 'A’ Award and past Young Investigator grantee, will study how DNA “unpacking” promotes acute myeloid leukemia (AML). Children diagnosed with AML have a poor survival rate. Dr. Lane believes that the physical structure of DNA could be important in leukemia development. He explained that if the DNA in a cell was stretched out, or unpacked, it would be six feet long. Yet to work properly, DNA needs to be tightly packed together into a space as small as the head of a pin. Under the microscope, leukemia DNA does not appear to be as tightly wound as it should, leading researchers to believe that problems in DNA packing can lead to the development of AML. Dr. Lane will study this phenomenon and will test if the drugs that target DNA packing can also kill leukemia cells. 

Read more about our grants programs here.

Categories: 
Research

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