THERE IS NO CURE FOR NEUROFIBROMATOSIS.
Since our very first Cupid’s Undie Run in 2010, we have spread awareness of neurofibromatosis (NF) and raised over $18,900,000, thanks to the 89,000 undie runners and 220,000 donations that supported over 190 events across the country. 100% of net proceeds from our programs goes specifically towards NF research through our partner, the Children’s Tumor Foundation.
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100% of net proceeds from our programs goes towards NF research through our partner, the Children’s Tumor Foundation.
The Children’s Tumor Foundation (CTF) and Cupid’s Charity are both 501(c)(3) non-profit organizations. CTF prides itself on its 4-Star Charity Navigator rating, spending over 80% of its revenue on programs and research. The Children’s Tumor Foundation was established in 1978 as the first grassroots organization dedicated to finding treatments for NF. Today, CTF is a highly recognized, national, non-profit foundation, and a model for innovative research endeavors.
CTF’s point of pride is in the NF clinical trials, which will result in approved treatments for patients. The Foundation’s research initiatives have generated 116 preclinical studies that have led to 16 clinical trials, including the advancement of the drug Selumetinib, which has been shown to shrink tumors over 70% of the time in NF1 patients. Selumetinib has been granted ‘Orphan Drug Designation’ by the FDA.
WHAT YOU NEED TO KNOW ABOUT NF
Neurofibromatosis (NF) is a rare genetic disorder that causes tumors to grow on nerves throughout the body and affects 1 in every 3,000 children born. There are three distinct forms of NF: NF1, NF2, and Schwannomatosis.
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.
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MAKE YOUR IMPACT
Every donation to Cupid’s helps us get closer to our goal of finding a cure for neurofibromatosis. Put your impact on autopilot and set up a recurring donation today.
Cupid’s Charity is a 501(c)(3) organization with Federal ID Number 45-3672776. All donations received are fully deductible to the extent allowable by U.S. law.
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