Raise $2,000,000 to develop new targeted therapeutics for incurable subtypes/high risk acute myeloid leukemia (AML) for pediatric patients under 5 years old.
"Your daughter has cancer. She has a strain of AML for which there is no current cure." These words are a parent's worst nightmare. We will never forget the day when we learned that Stella had Acute Myeloid Leukemia (AML). Our life was forever changed on that day in October 2016. For the next 13 months, we fought tirelessly for life, alongside Stella. Throughout all treatments, she was a beacon of hope – dancing to Lady Gaga, singing Bob Marley, playing with her brother, George. Stella underwent many rounds of chemo and a bone marrow transplant at Memorial Sloan Kettering. Just six weeks post-transplant, our nightmare got worse. We learned that Stella's leukemia was back. At that point, we knew we needed to make a change. We connected with Dr. Soheil Meshinchi at Fred Hutch (https://www.fredhutch.org/en/faculty-lab-directory/meshinchi-soheil.html), who is a renowned researcher and expert in complex pediatric AML. During this process, we interviewed doctors from Dana Farber to Cincinnati Children's to Oregon Health Sciences University, and decided to move to Seattle so Stella could benefit from the best minds in blood cancer. Stella had many exploratory treatments and a first-in-human immunotherapy trial, until her tiny body could not fight any longer. We lost our battle and our daughter in November 2017, just 3 weeks after her 4th birthday.
Since Stella's passing, not only have we been overcome with sadness, but also compelled to change the outcome for other families. It is shocking to learn that only 4% of cancer funding goes to research and find cures for pediatrics. This is not enough! Development of personalized, precision therapies is critical to improve outcomes and reduce toxic side effects. By studying Stella’s leukemic cells through advanced sequencing technology, The Meshinchi Lab at Fred Hutch has identified a number of abnormally expressed proteins, which are ideal targets that can kill the AML cancer cells without impacting normal cells. Since November 2017, The Meshinchi Lab at Fred Hutch has identified four targets (and growing) and two potential drugs that could be repurposed to knock these cancer cells out.
Generally speaking, it can take decades for research to lead to viable patient outcomes. Through private funding, we have the power to bring these therapies to families like mine in the next 12 to 24 months. BOTTOM LINE: We have an opportunity to develop cures without waiting on Big Pharma!
PLEASE PARTNER WITH OUR FAMILY AND FRED HUTCH SO THAT THE NEXT FAMILY MAY HAVE A DIFFERENT OUTCOME!
Casey, Jed & George
UPDATE AS OF JUNE 2020: RENEWED SENSE OF URGENCY
Thanks to the solid foundation the Novotnys built, Project Stella is able to reach other families affected by AML, such as Christina and Joe Siders. Christina and Joe recently teamed up with Project Stella to fuel cures for their 22-month-old daughter, Ella, who's being treated for the same form of AML that Stella had. Your gift will honor Stella's inspiring legacy by helping bring cures to Ella and so many other children. (http://engage.fredhutch.org/site/DocServer/Project_Stella_proposal_June_2020.pdf)