Children's Tumor Foundation

Mission:
The Children's Tumor Foundation (CTF) is a 501(c)(3) nonprofit organization dedicated to driving research, expanding knowledge, and advancing care for individuals affected by neurofibromatosis (NF) and schwannomatosis. The organization's vision is to end NF and improve the lives of more than 4 million people worldwide living with these genetic conditions.

Who They Serve:

• Individuals of all ages diagnosed with neurofibromatosis type 1 (NF1), NF2-related schwannomatosis (NF2-SWN), and other forms of schwannomatosis (SWN)
• Families, caregivers, and healthcare professionals involved in NF care
• The broader NF community, including researchers and advocates

Services and Programs:

• Patient Resources:
• Comprehensive educational materials about NF1, NF2-SWN, and SWN, including symptoms, diagnosis, and treatment options
• A Resource Center and NF Registry for patients and families
• Access to a "Find a Doctor" tool and information on NF clinics
• Educational events, webinars, and an annual NF Summit for patients, caregivers, and advocates
• Research and Clinical Trials:
• Funding and supporting innovative research projects and clinical trials to accelerate the development of effective treatments for all types of NF
• Strategic focus on developing more drugs, accelerating treatments, strengthening clinical trials, and empowering stakeholders
• Partnerships with industry and research institutions to advance drug development and gene therapy
• Awareness and Advocacy:
• Public awareness campaigns to "Make NF Visible" and reduce stigma
• Advocacy initiatives to improve access to care and research funding
• Volunteer opportunities and fundraising events
• Support for Healthcare Professionals and Researchers:
• Conferences, education, and training grants for medical professionals
• Access to research tools, resources, and funding opportunities

Eligibility and Service Area:

• Services and resources are available to all individuals affected by NF, including residents of Louisa County, VA, and surrounding regions. There are no explicit geographic restrictions for accessing educational materials, patient resources, or participation in national programs and events.

Impact and Approach:

• Since its founding in 1978, CTF has invested nearly $200 million in research and is recognized as the world’s leading nonprofit dedicated to NF research and patient support. The organization’s innovative, team-based approach brings together patients, families, researchers, clinicians, and industry partners to accelerate progress toward new treatments and, ultimately, a cure.