Letter to the Editor

May is NF Awareness Month

NF stands for neurofibromatosis, which encompasses a set of distinct genetic disorders that causes tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.

The No. 1 thing to be aware of during NF Awareness Month ... NF is real. People who live with NF overcome incredible obstacles. NF affects one in every 3,000 children born, more than cystic fibrosis, Duchenne muscular dystrophy and Huntington's disease combined. NF research is shedding new light on cancer, learning disabilities, and bone abnormalities -- benefiting people beyond the NF community.

Our family is personally touched by this disorder. Our daughter was diagnosed when she was 9 months old. She is now 12. She had very minimal manifestations until last June when it reared its ugly head in the form of a brain tumor. We take one day at a time and hope and pray that some day soon they will find a treatment or cure for NF.

We have made it our goal, in many aspects, to raise awareness of this disorder realizing not many people have heard of it. To learn more about NF, visit www.ctf.org.