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May is NF Awareness Month, and in a particular effort to help get the word out about NF, today — Thursday, May 20th — is NF Awareness Day.
Neurofibromatosis (NF) is a genetically inherited disorder that predisposes individuals to the development of a variety of benign and malignant tumors in the central and peripheral nervious systems. The disorder affects neural crest cells and causes tumors to grow along various types of nerves and can also affect the development of bones and skin.
The Children’s Tumor Foundation (CTF) is the leading non-governmental funder of scientific research into neurofibromatosis. The CTF has funded NF research for over 25 years with the goal of identifying NF drug therapies and improving the lives of those living with the disorder. The Foundation also endeavors to increase public awareness of NF and provides resources for NF patients and their families. Straight from the CTF, here are ten things to be aware of about NF:
Number 9: It only takes 8 to 10 letters to your congressman or congresswoman (from you and your friends) for them to start noticing that NF is a very REAL issue.
Number 8: NF research is shedding new light on cancer, brain tumors, learning disabilities, and bone abnormalities — ultimately benefiting the broader community, in addition to those with NF.
Number 7: On May 8th, in Greensboro NC, there were more than 1,700,000 steps taken to find a cure for NF at the first North Carolina NF Walk.
Number 6: The NF Clinic Network now has 42 recognized centers throughout the country.
Number 5: This year, Racing4Research completed 611 Laps in the Rolex 24 Hours at Daytona International Speedway raising spirits, funds, and awareness for our NF Heroes!
Number 4: To date, the Children’s Tumor Foundation investment of $700,000 in the Drug Discovery Initiative has returned $3.7 million in follow-on funding; every dollar counts.
Number 3: In 2009 more than 1,500 Runners in NF Singlets crossed finish lines in 50 races nationwide for the NF Endurance Team.
Number 2: There are three forms of neurofibromatosis — NF1, NF2, and schwannomatosis. Each cause tumors to grow on nerve endings in or on the body.
Number 1: Every day NF research is moving closer to treatments and a cure for the many manifestations of NF. Your continued support of this critical research is bettering the lives of millions of people as we work to end NF.
For the last four years, I’ve been actively involved in NF research, working to identify molecular signatures and therapeutic targets in peripheral nerve tumors. I encourage readers to visit the Children’s Tumor Foundation and consider a gift donation to make a difference in the lives of those affected by NF.
Early-phase Trial Demonstrates Shrinkage in Pediatric Neural Tumors
MIA is a Potential Biomarker for NF1 Tumor Load
The 2010 NF Conference – Connecting the Public with the Research
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