Neurofibromatosis (NF) is a genetic disorder of the nervous system characterized by tumors that can grow on any nerve in the body without warning. It is caused by a genetic mutation that occurs in 1 of every 2,500 births.
There is no cure for NF, and there are currently no treatments available for the 140,000 living with it. Annually, federal funding (through a Department of Defense program called the NF Research Program) totals approximately $15 million. While this funding, along with funding directly from NF support organizations around the country, is invaulable, it is sadly not enough to provide what is necessary to really make headway towards a cure.
The key to truly making a difference in the lives of those living with NF and the efforts to increase funding for research is AWARENESS. That is why we created The Giving Selfie.
Using the power of social media, The Giving Selfie has the potential to raise awareness for Neurofibromatosis on a huge scale, teaching tens of thousands (or more) about this insidious disorder as well as encouraging new supporters to help fund the search for a cure.For questions about The Giving Selfie and how you can get involved, please contact us at firstname.lastname@example.org.
Doodle 4 NF is an annual fundraiser for the Neurofibromatosis Network. Autographed Celebrity Doodles are collected year-round and offered for sale during a 10-day auction each May. The 2016 auction begins on May 5th and ends on May 15th. If a Celebrity Doodler submits two Doodles, the second is posted on day 2 and continues to day 11 (May 6 thru May 16 this year). Most Doodles are submitted on standard 5.5„ x 8.5&bdquo Doodle Cards, which are available by contacting email@example.com. Doodles on other materials or of odd sizes are so noted in the description of the Doodle. Check out this year's celebrity doodles at Doodle4NF.org.
Neurofibromatosis Network was founded in 1988 as a 501(c)3 non-profit organization to join together several independent state and regional NF groups wishing to work together on national projects. The Mission of the NF Network is to find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, providing outreach through education and awareness, while offering hope and support to those affected by NF. Visit NF Network's website for more information about NF and how you can help.
The NF Hope Concert was founded in 2011 to raise awareness and much needed financial support for NF advocacy and research programs. Since it's inception, the concert has raised over $350,000 and taught several thousand people about Neurofibromatosis. The concert began in Las Vegas, NV and after five years continues to bring together the city's top headliners for an afternoon of entertainment and information. This 6th Annual NF Hope Concert will take place on Sunday, October 23, 2016 at 1:00 pm in the Sands Showroom at The Venetian. The NF Hope Concert is expanding it's reach into new markets. Staring in 2017, watch for the inaugural Los Angeles NF Hope Concert! To find out more about the NF Hope Concert to how to be a part of it.