“We feel it is very important to seek research, support, and awareness not only for Ella but for other families faced with the challenges of neurofibromatosis. This page will keep you updated on our efforts and present opportunities to contribute to this fledgling group; by providing encouragement to Ella, by sharing the page thereby increasing awareness, by giving your input on fundraising ideas, and yes by helping financially if you are so inclined. We would like to start a foundation… so more to come as we continue our fight!!!”
Cupid’s Undie Run is a mile(ish) run in your bedroom-best in Febuary. No, we’re not crazy, we’re just crazy serious about raising money for The Children’s Tumor Foundation and neurofibromatosis research.
WHY ARE WE DOING THIS?
Neurofibromatosis (NF) is a genetic disorder that causes tumors to grow on nerves throughout the body, causing blindness, deafness, learning disabilities and severe chronic pain.The Children’s Tumor Foundation (CTF) is the world’s largest non-government organization dedicated to ending NF through research. Currently, there is no cure for NF and there are frighteningly few treatment options.
The Children’s Tumor Foundation is a Charity Navigator 4-Star charity that prides itself on efficiency, spending 82.4% of its revenue on program expenses and less than 8% on administrative costs.Cupid’s Undie RunNF affects roughly 1:3,000 births in the U.S. and is in desperate need of new discovery, so we’re on a mission to #EndNF and all proceeds benefit the Children’s Tumor Foundation.
The Foundation’s mission is to advance peer-reviewed research to develop treatments and cures for NF; support persons with NF and their families by making thorough and accurate information readily available; to assist in developing clinical centers and best practices to improve access to quality healthcare for those who live with NF; and expand public awareness of NF to improve diagnoses, increase understanding of the challenges that NF presents, and encourage support for NF research.
WHY ARE WE DOING THIS—IN OUR UNDIES?
You already know we run to raise money for CTF and kick NF in the butt. But why do we run with our butts out? It’s simple. We run in our undies because people with NF can’t cover up their tumors. They can’t put clothes on to feel more comfortable, so why should we?