The Children’s Tumor Foundation 'I Know a Fighter’ Initiative Brings Attention to Brave Heroes Battling Rare Genetic Disorder
NEW YORK – May 1, 2018 – Neurofibromatosis, or NF, is a genetic disorder that few have heard of, yet it affects over 125,000 Americans and over 2.5 million people worldwide. The Children’s Tumor Foundation is working to change that through a month-long campaign drawing attention to the inspirational and remarkable stories of those living with NF, and the critical need for research to better their lives. The ‘May is NF Awareness Month’ 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.
NF causes tumors to grow on nerves throughout the body. As part of the campaign, the Foundation’s I Know a Fighter initiative is a reflection of the bravery that NF patients exhibit in their daily lives. The NF story can be one full of hurdles – diagnosis, symptoms, doctor appointments, MRI scans, pain, surgeries and/or chemo. But the NF story is also one of perseverance, strength and inspiration, which are reflected in the “fighter” spirit.
One of those NF fighters is Samantha Voorhees, a business development manager and mom from Woodland Park, NJ. “I have good days and bad days but I will never let my NF interfere with my daily life or my life goals. At times I may struggle but that doesn’t mean I want to be treated any less than the strong woman and mother that I am.”
Samantha’s story and those of nine others living with NF have been captured by award-winning photojournalist and NF Dad Craig Warga in a series of photographs called This is NF. The collection is available online at ctf.org/thisisnf.
In addition to reading and sharing these stories, there are many ways to get involved in NF Awareness Month:
“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 fundraising and awareness campaigns like Shine a Light on NF, I Know a Fighter, #EndNF, and This is NF, 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.