Raising Awareness for Genetic Disorder that affects 1 in 3,000
NEW YORK – May 2, 2016 – Today the Children’s Tumor Foundation announced its annual month-long campaign to raise awareness about neurofibromatosis (NF), a genetic disorder that causes tumors to grow on nerves throughout the body. It affects 1 in 3,000 people of all populations; there is currently no treatment or cure.
Through numerous community events held during the month of May, as well as online activities, Neurofibromatosis Awareness Month and “I Know a Fighter” aim to draw attention to the inspirational and remarkable stories of those living with NF, who are fighters in every sense of the word. A new part of the initiative this year will be “Born a Fighter,” a component that will empower those living with NF to acknowledge their own strength and resilience. 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.
There are multiple ways to get involved:
- Shine a Light on NF Over 100 buildings, bridges and monuments (including Niagara Falls and the John F. Kennedy Airport Air Traffic Control Tower) around the world will light up blue and green for NF Awareness Month. This year, CTF aligned efforts with the Neuro Foundation, a national NF charity in the U.K., to extend the reach globally.
- Enter the Picture a World Without NF photo contest. Take a photograph with any item that shows the CTF or End NF logo. Express yourself and show the world that, no matter where you are, who you are with, or what you are doing you’re fighting for a world without neurofibromatosis.
- Visit the Children’s Tumor Foundation events calendar for a complete schedule of NF Walks, NF Endurance events, Racing4Research races, and local community fundraisers taking place all across the country to raise money to fund NF research and recognize the positive spirit and resolve of local NF Heroes and their families.
- Follow the Children’s Tumor Foundation (@childrenstumor) on Facebook, Twitter, Instagram and Youtubefor more NF Heroes and stories about how the community is working to End NF.
- Look for shopping carts embellished with NF awareness messages in over 4,000 supermarkets across the country, donated by News America Marketing. Take a photo, post it online and tag @childrenstumor and #EndNF.
- Purchase exclusive merchandise with “I Know a Fighter,” “Born a Fighter,” and End NF imagery, and support the efforts of the Children’s Tumor Foundation.
“NF Awareness Month is a unique time that exemplifies the determination of the NF community, a resolve to never give up our fight,” said Annette Bakker, PhD, Children’s Tumor Foundation President and Chief Scientific Officer. “Because NF manifests itself in a number of ways, we need many ways to fight it, and that includes these fundraising and awareness campaigns that make it even easier to connect, understand and educate about neurofibromatosis.”
Throughout the month of May, for every dollar donated to CTF, a dollar will be donated to NF clinic initiatives in honor and memory of Sherri Silesky, up to $75,000. Sherri demonstrated tremendous strength and power of spirit, often sprinkled with her wonderful sense of humor. Our thanks go to the Silesky family for continuing Sherri’s fight to end NF through this generous matching gift.
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. To learn more, visit www.ctf.org.
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 causes tumors to grow on nerves throughout the body and may lead to blindness, deafness, learning disabilities, disfigurement, bone abnormalities, disabling pain, and cancer. 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.
