Partnerships
Together with the Children’s Tumor Foundation, Penny’s Flight is co-funding the first-ever clinical study to explore whether treatment can improve brain structure and cognitive function in children with NF1, not just slow tumor growth. The five-year study tackles one of the most overlooked parts of NF: the learning, attention, and memory challenges faced by more than half of kids with NF1.
“We are thrilled about the partnership between Penny’s Flight and CSHL and could not ask for a better partner in the quest to find a cure for neurofibromatosis,” says Chad Doerge, who co-founded Penny’s Flight with his wife, Kate Doerge, in honor of their late daughter. “CSHL is a beacon of innovation in medical research. As they set their vision on the complex problems presented by NF, we know the resulting science will promise a brighter future for those affected by the disease.”
The Penny Doerge Adaptive Academy (PDAA), a program offered at the Lerner Children’s Pavilion, the children’s hospital at HSS, organizes local and regional adaptive programs to offer pediatric patients with challenging musculoskeletal conditions the opportunity to participate in active
adventures. The PDAA was first piloted in 2014 with a single ski trip that served 10 children in the hopes that it would help them cope with their limitations outside the hospital walls.
Ongoing partnership.
BX Gives Back
Pictured: Courtney Janssen (left) and John Gray (right)
Big News
Penny’s Flight Foundation was awarded a $125,000 general operating grant from the Blackstone Charitable Foundation as part of their global, employee-driven BX Gives Back Challenge!
This incredible gift, championed by the amazing Courtney Janssen, helped fuel our mission to raise awareness, fund critical research, and support families affected by Neurofibromatosis (NF).
Thank you, Blackstone Charitable Foundation, for helping us soar—and for believing in a future where we will #endnf.
It Takes One Boat To Be Courageous.
Oarsome Expedition used the sport of Ocean Rowing and attempted to row around the world within 2 1/2 years. They rowed for our Veterans and their K9 service dogs, those families living with Neurofibromatosis (NF), and those struggling with eating disorders.