It鈥檚 the most common single-gene neurological disorder in the world. It is typically diagnosed in children. It鈥檚 often accompanied by learning challenges. It can lead to tumors in the brain, spinal cord, and throughout the body. It鈥檚 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 黑料吃瓜资源 (CSHL) and the Penny鈥檚 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.
鈥淲别 are thrilled about the partnership between Penny鈥檚 Flight and CSHL and could not ask for a better partner in the quest to find a cure for neurofibromatosis,鈥 says Chad Doerge, who co-founded Penny鈥檚 Flight with his wife, Kate Doerge, in honor of their late daughter. 鈥淐SHL 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.鈥
鈥淲别 will find a cure for NF,鈥 adds Kate Doerge. 鈥淏ut we could not do it without the incredible support of generous donors and our CSHL partnership.鈥

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鈥攕mall, benign growths. They鈥檝e already uncovered a trait shared among all NF1-associated cancers.
鈥淚t has been an absolute delight getting to know and work with Kate and Chad Doerge,鈥 says CSHL鈥檚 Sarah Kitt. 鈥淭heir 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鈥檚 new project.鈥
was founded to celebrate the life of Penny Doerge and the qualities she personified鈥攋oy, artistic expression, and humor鈥攚hile 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 | [email protected] | 516-367-5940
