NEW YORK – May 1, 2015 – Today the Children’s Tumor Foundation launched a new campaign to increase awareness about neurofibromatosis (NF), a genetic disorder that can cause tumors to grow on nerves throughout the body. It affects one in 3,000 people of all populations; there is no effective treatment or cure.
Through various offline and online events held during the month of May, Neurofibromatosis Awareness Month, “I Know a Fighter” aims to draw attention to the inspirational and remarkable stories of those living with NF, who are fighters in every sense of the word. The campaign will take place across multiple platforms and include a heavy social media presence centered on those fighting NF and those who support them in their fight.
“Neurofibromatosis manifests itself in a number of ways, so we need many ways to fight neurofibromatosis,” said Annette Bakker, PhD, Children’s Tumor Foundation President and Chief Scientific Officer. “The ‘I Know a Fighter’ campaign is an opportunity to recognize the many approaches the community takes to push back against NF – the patients living courageously; the scientists researching treatments and a cure; the volunteers driving awareness in the community; the donors raising money to fund critical research; and the families supporting one another at every doctor appointment. Throughout May NF Awareness Month, we want to make it even easier to connect, understand, and educate about neurofibromatosis.”
There are multiple ways for the community to get involved:
• Shine a Light on NF Buildings, bridges and monuments (plus Niagara Falls) will light up blue and green for NF Awareness Month. Visit www.ctf.org/nfawareness for a complete schedule, and tools to use to approach landmarks in your community.
• Follow “I Know a Fighter” on Facebook, Twitter, Instagram and Youtube for more NF Heroes and stories about how the community is working to End NF.
• Visit the CTF calendar for a schedule of NF Walks, NF Endurance events, Racing4Research races, and local community fundraisers taking place all across the country to raise money to fund research into NF and recognize the positive spirit and resolve of local NF Heroes and their families.
• Purchase exclusive merchandise with “I Know a Fighter” and End NF imagery, and support the efforts of the Children’s Tumor Foundation.
In addition to this exclusive campaign, for the first time ever, every dollar donated to the Children’s Tumor Foundation during May NF Awareness Month will be doubled thanks to generous matching gift donations from Jim Bob and Laurée Moffett (NF1), Carol Harrison (NF2), and Richard and Erica Horvitz (schwannomatosis).
The Children’s Tumor Foundation is committed to finding effective treatments for the millions of people worldwide living with neurofibromatosis. In addition to benefitting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community.
About Children’s Tumor Foundation
The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF can cause tumors to grow on nerves throughout the body and may lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. NF affects one in every 3,000 people, more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research into neurofibromatosis. In addition to benefiting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community. For more information, please visit www.ctf.org.
