Learn more about our goals and mission.
Inspired by Letta K. Lewis -— a beloved teacher, chef, daughter, and sister whose life was cut short at age 39 due to delayed diagnosis and treatment of NF1—we are committed to transforming the landscape of Neurofibromatosis (NF) care and awareness. Our mission is to prevent other families from experiencing the devastating impact of delayed diagnosis and insufficient medical knowledge that Letta faced during her 27-year journey with NF. Through innovative research funding, education, and advocacy, we particularly focus on reaching underserved Black, African American, Hispanic, and Latino communities who may lack awareness and access to NF resources. We honor Letta's fighting spirit and infectious smile through our annual Letta's Fight 5K Walk/Run and strategic sports partnerships, including our collaboration with All In Sports (AIS)). Under the banner of #Sports4NF, we unite communities, raise critical funding for research, and provide educational opportunities for those affected by NF—ensuring that Letta's legacy lives on through every life we touch and every medical breakthrough we help achieve.
A world free from Neurofibromatosis, where every individual affected by NF can live without the burden of tumors, complications, and uncertainty. We envision a healthcare system fully equipped to diagnose, treat, and support NF patients with comprehensive care that recognizes the crucial role of mental health. Through education and advocacy, we strive to transform medical institutions' understanding of NF, ensuring that every patient receives holistic care that addresses both their physical symptoms and emotional well-being.