OUR FOUNDING STORY
It all started with a crazy idea…
In 2010, a group of do-gooders dropped their pants and ran through the D.C. cold to raise money for research to help end neurofibromatosis, a rare genetic disorder that can cause tumors to grow anywhere on or in the body. In 2012, Cupid’s Charity became a recognized 501(c)(3) non-profit and since its inception has raised over $16,900,000.
WHAT IS NF?
Neurofibromatosis (NF) is a rare genetic disorder that causes tumors to grow anywhere on or in the body and affects 1 in every 3,000 children born. There are three distinct forms of NF: NF1, NF2, and Schwannomatosis. At this time, there is no approved cure for NF.
Neurofibromatosis 1 is characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF1 also have learning disabilities.
Neurofibromatosis 2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Hearing loss beginning in the teens or early twenties is generally the first symptom.
Schwannomatosis is a rare form of NF which is less well understood than NF1 and NF2 and has only recently been identified. The genetic disorder affects less than 1 in 40,000 people, and causes the development of benign tumors — called schwannomas — usually on spinal and peripheral nerves.
FINDING A CURE
Our mission is to accelerate the discovery of a cure for NF by inspiring our loyal community of supporters to do good year-round through boundary-pushing experiences. Everything we do is guided by our three core values:
1. Always lead with love.
2. Never stop innovating.
3. Attitude is everything.
We raise money for our partner the Children’s Tumor Foundation (CTF). CTF is the world’s largest non-governmental organization dedicated to ending NF through research. Currently, there is no cure for NF and there are frighteningly few treatment options,but we’ve raised over $16.9 million over the years and we’re getting closer to a cure to #EndNF!
Sign up for a monthly delivery of inspiration and the inside scoop on events.