On May 17, hundreds of landmarks around the world will “Shine a Light on NF” to raise awareness for genetic disorder that causes tumors and has no cure at this time
NEW YORK – May 17, 2018 – The Children’s Tumor Foundation is pleased to announce that in recognition of NF Awareness Month architectural icons across the globe will show their support in the fight against neurofibromatosis (NF) by lighting up in blue and green, the official colors of the NF cause.
The Children’s Tumor Foundation launched in 1978 as the National Neurofibromatosis Foundation (NNFF), established by NF patient Lynne Courtemanche, RN, her doctor Allan E. Rubenstein, MD, and attorney Joel S. Hirschtritt, Esq. A young child at the time, Ken Rudd’s mom, Joan Engel, was President of the Foundation from 1981 through 1984. Ken is now a member of CTF’s Board of Directors.
As we celebrate 40 years of driving research, expanding knowledge, and advancing care for the NF community, we asked Ken to reflect on the early days of the Foundation, how the community has grown, and the progress made in NF research for treatments and a cure.
The new issue of NF News, the official newsletter of the Children's Tumor Foundation, is now available! In this issue you will find:
- 40 Years of Fighting NF
- Orphan Drug Status from FDA
- Synodos for NF2 Research Update
- NF Awareness Month
- Donor Impact: The Harrison Family
- And so much more!
Enter the 2018 Children’s Tumor Foundation NF Awareness Month I know a Fighter photo contest!
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.