I'm fundraising to help Boston Children’s continue its amazing research efforts in pediatric brain cancer in honor of my daughter Emma and every other warrior fighting this battle. In the last 10 years there have been many breakthroughs with precision medicine, but we are lacking a safe and effective treatment that targets the FGFR1 mutation driving Emma's tumor growth.
Our 8 year old daughter Emma has been battling a brain tumor for her entire life, since she was 17 months old when her tumor bled and she suffered a stroke.
Emma has had six brain surgeries, has a shunt to control hydrocephalus caused by her brain tumor, and still her tumor cannot be fully removed. She has also been on many chemotherapies with minimal success over the last 6+ years.
The research we're backing at Boston Children's will be directly impactful to Emma. It's a two year research program that will study ten different targeted therapies to see which of these most effectively hits the genetic profile of Emma's tumor. Approximately 10-20% of all pediatric brain tumors share this genetic profile (FGFR mutation) so this impacts hundreds of kids a year.
Fortunately for 50-60% of kids with this disease with the BRAF mutation, these targeted therapies already exist and we are trying to find one just as effective for FGFR, which has proven to be an aggressive mutation. Currently, there are no effective inhibitors for FGFR pediatric brain tumors.
The team at BCH has created a research study to assess 10 different FGFR inhibitors in a pre-clinical setting to help narrow down the candidates for further research. This is the first major step in finding a more targeted therapy for the 10-20% of pediatric brain tumor patients with the FGFR mutation. This two-year study will require $300,000 in funding, with $100,000 required to get it started so that’s where we’re starting.
Our fundraising goal is currently $100,000 because that's what it will take to get this work started, but the ultimate need is $300,000 over two years.
Thank you for your consideration and thank you for your support. We truly could not do this without you.
Thank you,
The Rutherford Family and the FGFR Fighters Team
