Over the past 40 years, there have been tremendous advancements in neurofibromatosis (NF) research, many of which can be traced back to research funded by the Children’s Tumor Foundation (CTF). From the very beginning, this Foundation was able to achieve a great deal for patients and families affected by NF. Carefully nurtured relationships between esteemed medical professionals, talented scientists, compassionate clinicians, generous financial supporters, tireless volunteers, and committed staff members forged a path that has brought us to where we are today, at the precipice of what could be the first FDA-approved drug to treat NF.
In 1978, motivated to create the support group she was longing for, NF patient Lynne Anne Courtemanche, RN, her physician Allan Rubenstein, MD, and Joel S. Hirschtritt, Esq. founded the National Neurofibromatosis Foundation (NNFF). In the early years, the organization was managed and supported entirely by volunteers who gave generously of their time and talents. As the Foundation grew, it also engaged individuals and professionals with no personal connection to NF. The NNFF changed its name in 2005, and today, the Children’s Tumor Foundation is a highly recognized national nonprofit foundation and a model for innovative research endeavors.
This year, the Foundation celebrates 40 years of driving research, expanding knowledge, and advancing care for the NF community. Collaboration, open data access, and accelerated drug development are our guiding principles. Today’s CTF connects the unconnected by assembling and managing a unique collaboration of leading researchers, clinicians, patients, funders, and pharmaceutical companies with the ultimate goal of accelerating the development of treatments for NF. CTF has built the research platform that brings these groups together and is delivering on many NF firsts: advancing the Synodos consortia, increasing the NF data hub, growing the CTF Biobank, and expanding the NF Registry. This pioneering approach is grounded in our belief that this is the better way to fight rare disease.
Our approach also connects patients all over the world. In fact, patients are always at the heart of everything we do. CTF’s team science approach focuses on issues chosen by patients themselves, and our patient outreach, advocacy initiatives, and community events ensure that all NF patients and their families know that they are not alone in this journey. We’re proud to have led the way in NF research for the past 40 years, and will continue to do so for the next 40 if needed, so that NF patients can live their lives free of the pain and difficulties that come with neurofibromatosis, and one day, we can end NF.