The Texas Neurofibromatosis Foundation was founded in 1978 by an Austin mother whose son had NF, a genetic disorder that causes disfiguring tumors. While the disease is not uncommon, most people do not know of the disease, partially because people who have it tend to shield themselves to avoid public ridicule.
During the ten years after it was founded, the families involved with the foundation raised money any way they could – from walkathons, skateathons, garage sales, and all the other means “families” use to help their own.Relief for the group came when the Dallas and Houston NFL alumni adopted their cause. Annual golf tournaments were established to support a small office in Austin and raise limited funds to support budding research projects. Continue reading Philanthropy World Profiles Texas NF Foundation by Bob Hopkins
Neurofibromatosis: New Research, Clinics Offer Hope
Newswise — After ten years and $217 million worth of “bench to bedside” research, there are signs of hope in the medical community and among the 1 in 3,000 individuals worldwide who have neurofibromatosis (NF), a serious neurological disorder that causes tumors to grow on nerve sheaths throughout the body, according to the Children’s Tumor Foundation (CTF). And, that is something to celebrate during May, 2007 which is National NF Awareness month. Continue reading May is National NF Awareness Month!!!
I want you to meet a friend of mine. This guy is so cool. Everyone speaks about me being an encouragement. This is Lou and he gives me that spirit to do what I’m doing for this site.
When I get discouraged he gives me that kick start when I slow down. When we get together watch out. Great energy and fun. So its not always about me, but most of the time it is. Just kidding. Let Lou know you love him!
Also, I’d like to thank my good friend and great photographer, Marcus Medellin, for these wonderful photos!!! You rock, Marcus!
For all of you who missed the NF SYMPOSIUM presented by the Texas NF Foundation, we will be posting the presentations online just as soon as we can convert them to the proper format for easy streaming. Unfortunately, I need to rely on the kindness of strangers to get this type of processing done but soon it will be done! Thank you Texas NF Foundation for allowing me to record video and take lots of photos to share on my website. It was a Saturday full of great fun, great friends and great information!!! Plus, I made a lot of new friends!!! If you have never gone to one before, I definitely recommend you attend the next one. AND CAMP CAMP THIS SUMMER IS A MUST!!!
NF FAMILY CAMP, CAMP FOR ALL
SEPT 7 – 9, 2007
The Texas NF Foundation is thrilled to bring you the 16th Annual NF Family Camp. The purpose of this camp is for families affected by NF to connect with one another in a place where our commonality is NF. It will be a time to learn and laugh as we make meaningful relationships with new friends and grow closer to our own families.
More info: http:/www.texasnf.org