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New hope in the fight against neurofibromatosis

image of CSHL employees with Pennys Flight Foundation individuals at Cold Spring Harbor Laboratory
Members and supporters of Cold Spring Harbor Laboratory (CSHL) and the Penny’s Flight Foundation came together at CSHL’s Blackford Hall on March 12 to celebrate their new partnership in the fight against neurofibromatosis (NF).
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It’s the most common single-gene neurological disorder in the world. It is typically diagnosed in children. It’s often accompanied by learning challenges. It can lead to tumors in the brain, spinal cord, and throughout the body. It’s called neurofibromatosis type 1 (NF1). One out of every 3,000 people is born with the disease. And there is no known cure. Despite all this, research on NF1 has been historically underfunded.

A new partnership between Cold Spring Harbor Laboratory (CSHL) and the Penny’s Flight Foundation aims to change that. The Foundation has joined with CSHL Professor Linda Van Aelst and Assistant Professors Michael Lukey and Jeremy Borniger to tackle the condition head-on. Their work may lead to new, innovative therapies for NF1 and other neurological disorders. It may also provide new insights into glioblastoma, the most common form of brain cancer.

“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.”

“We will find a cure for NF,” adds Kate Doerge. “But we could not do it without the incredible support of generous donors and our CSHL partnership.”

Pennys Flight Partnership
Left: (L to R) Penny’s Flight co-founder Kate Doerge and CSHL President & CEO Bruce Stillman with partnership supporters Duke Barnett and Veronica Swanson Beard. Right: Chad and Kate Doerge, who founded Penny’s Flight after losing their daughter to NF1 in 2022.

Van Aelst, Lukey, and Borniger have taken a multi-pronged, collaborative approach to uncovering the root causes of NF1. Their first project studies how cancer and immune cells interact in NF1-related brain tumors. The team is also investigating links between nerve cells and neurofibromas—small, benign growths. They’ve already uncovered a trait shared among all NF1-associated cancers.

“It has been an absolute delight getting to know and work with Kate and Chad Doerge,” says CSHL’s Sarah Kitt. “Their unwavering dedication to finding a cure for this dreadful disease radiates the love they hold for their daughter and the passion they have to cure NF. We are incredibly grateful to have such remarkable individuals involved with CSHL’s new project.”

Penny’s Flight was founded to celebrate the life of Penny Doerge and the qualities she personified—joy, artistic expression, and humor—while living with NF1. The Foundation supports much-needed research on neurofibromatosis and related disorders. It works to expand knowledge, inspire others, and make a lasting impact on altering the course of these devastating neurological conditions.

Written by: Nick Wurm, Communications Specialist | | 516-367-5940

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