CCRF donors raced against rare leukemia, and now they're bringing treatments to the finish line and honoring the bravery of two little girls.
The Race Against Rare Leukemia began with passionate parents Casey and Jed who created Project Stella in 2017 in their daughter’s memory. Stella had a rare and deadly form of leukemia. She participated in many exploratory treatments and an immunotherapy clinical trial, but those treatments weren’t enough – she passed away in November 2017, just three weeks after her fourth birthday. Towards the end of Stella’s life, Casey and Jed connected with Soheil Meshinchi, MD, PhD, the only researcher in the U.S. studying this type of leukemia. They knew his research wasn’t far enough along to save their daughter, but their goal was to support treatments that would save kids like Stella in the future.
Ella’s mom, Christina, is not aware of anyone who has survived this same rare leukemia that took over her daughter when she was 1 year old. Now 4 years old, Ella’s cancer is gone, but the odds are high that it will return.
Ella’s parents know the science hasn’t caught up to their daughter’s type of cancer, and without better treatments, the odds are stacked against her. But they’ve turned that fear into action, raising funds for research they hope will yield safer, more effective treatments for high-risk AML right now. The goal of this research is to prevent relapse and reduce side-effects. Ella and her family bravely shared her story with CCRF donors, hoping for more support. They - and families like Stella’s - have run a long race against Ella’s leukemia, and they needed partners who were willing to push a potentially lifesaving new treatment over the finish line.
The Finish Line - A New Clinical Trial Opens
Thanks to the swift action of our supporters, Ella’s family now has the hope of a new treatment where none had existed before, one that could save her if the leukemia comes back. CCRF donors raised $270,000 to support Soheil Meshinchi, MD, PhD through the Race Against Rare Leukemia campaign, helping Ella’s family meet their fundraising goal to kickstart a groundbreaking Phase I clinical trial.
“This is probably the most aggressive leukemia I’ve ever seen, and conventional therapies really don’t work,” he said. He’s developing a new immunotherapy that involves no chemotherapy, no life-threatening transplant and likely a much lower risk of relapse. You can read more about his work here.
Scientists seldom get the funding they need to create new treatments quickly for rare diseases like Ella’s, but thanks to our supporters, Meshinchi can begin the clinical trial in record time. He’s aiming to have it started in early 2023.
Funding will also allow families to travel and receive the treatment free of charge, meaning no child will be denied treatment due to their financial circumstances. .
“Ella’s the only one who has gotten to this point,” Joe, Ella’s dad, said. “If we can get through the next treatment, if we can get through the next rotation of the doctors, the cure might be available then.”
“Because of the support from foundations and families, we’ve been able to really bring this from target discovery to a treatment that’s on the verge of going into clinical trial in record time,” Meshinchi said.
CCRF donors are truly committed to saving kids’ lives by giving researchers the funding to realize a childhood cancer-free world. We couldn’t be more grateful for the remarkable support extended to these two extraordinary families and hard-to-treat leukemia research.
Support lifesaving research for rare cancers
You can change the course for kids with rare forms of cancer, like Ella, by supporting lifesaving research.