10 Things to be Aware of on NF Awareness Day

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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.

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.

Neural crest cells: specialized cells that contribute to the formation of multiple tissues, including sensory nerves, the enteric nervous system that controls the gut, pigment cells of the skin, various skeletal and connective tissue of the head, and part of the valves and blood vessels of the heart. During early development, neural crest cells — a transient, multipotent cell population — migrate to many different locations and differentiate into many cell types within the embryo.

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 10: NF affects more than one in every 3,000 children born each day, more than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined (learn more).

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.

About the Author

Walter Jessen, Ph.D. is a Data Scientist, Digital Biologist, and Knowledge Engineer. His primary focus is to build and support expert systems, including AI (artificial intelligence) and user-generated platforms, and to identify and develop methods to capture, organize, integrate, and make accessible company knowledge. His research interests include disease biology modeling and biomarker identification. He is also a Principal at Highlight Health Media, which publishes Highlight HEALTH, and lead writer at Highlight HEALTH.