Raising Awareness for Genetic Disorder that affects 1 in 3,000
NEW YORK – May 1, 2017 – 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, NF Awareness Month aims to draw attention to the inspirational and remarkable stories of those living with NF and the critical need for research. The campaign takes place across multiple platforms and includes a heavy social media presence centered on those fighting NF and those who support them in their fight.
A key component to this year’s campaign is the new photo series by award-winning photojournalist Craig Warga, an NF parent who set out to inspire his young son, who lives with NF1. This collection is about people living with neurofibromatosis - not just living, but succeeding and thriving. The NF story can be one full of hurdles - diagnosis, symptoms, doctor appointments, MRI scans, surgeries and/or clinical trials. With this project, we’re telling a side of the NF story that isn’t often told: the passion that those living with NF bring to their daily lives, to their work, their goals, their relationships, the things they want to get out of life, with or without NF. This collection launches online at ctf.org/thisisnf with portraits and profiles of 11 adults living with NF.
One of the people featured is Marisa McGrody, a photographer in New York City. “I hope someday I'll get mobility back in my right arm and have less pain,” she says. “But I also want people to know that just because I have an illness and can only use one arm right now, it has not stopped me from doing my job and living out my dream as a photographer.”
In addition to reading and sharing these stories, there are many ways to get involved in NF Awareness Month:
- Shine a Light on NF Over 120 buildings, bridges, landmarks and monuments (including Niagara Falls, the John F. Kennedy Airport Air Traffic Control Tower, and the Trafalgar Square Fountain) around the world will light up blue and green. This year, CTF aligned efforts with the Neuro Foundation (a national NF charity in the U.K.), the Tumour Foundation of British Columbia, NF Kinder (Vienna, Austria), and Texas Neurofibromatosis Foundation, among others, to extend the reach globally. Visit ctf.org/shinealight for a complete list of participating locations, and tools to use to approach landmarks in your community.
- Cities and states around the country have proclaimed May as NF Awareness Month or May 17 as World NF Awareness Day. Visit ctf.org/nfawareness for a complete list of participating cities and states.
- Enter the 2017 Children’s Tumor Foundation NF Awareness Month photo contest and show us Where in the world do you end NF! Raising awareness for NF can happen anytime, anywhere. Whether you’re on vacation, at work, at school or just hanging out in your front yard, we know you’re on call 24/7/365, telling others what NF is, how it impacts your life and the significance of funding research. Submit a photograph to firstname.lastname@example.org with any item that shows the CTF or End NF logo.
- 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.
- Visit the Children’s Tumor Foundation events calendar for a complete schedule of NF Walks, NF Endurance events, 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.
“NF Awareness Month is a unique time that exemplifies the determination and resolve of the NF community,” 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.”
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, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF affects 1 in every 3,000 births across all populations equally. There is no cure yet – but the Children’s Tumor Foundation mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF. For more information, please visit www.ctf.org.