My First Blog

So, I decided to start a blog. A lot of NF'ers (people with Neurofibromatosis) like to complain that there is not enough NF awareness out there but they are not doing anything about it. It is not the sole responsibility for The Children's Tumor Foundation or the Texas NF Foundation to raise awareness and we cannot expect a "celebrity"  to do the work for us. I have always tried to take the proactive approach. If we want a cure or treatment to be discovered WE must be the ones out there advocating for research dollars and educating the public disorder. We also need to stay informed about current clinical trials and advances in any medications that may be available to help treat our symptoms. It is also best if we go to reliable resources for correct information and not just the information that may be posted on Facebook or other social networking sites. The better educated we are the better we can educate others about us.