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
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
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
Today the Texas NF Foundation had its annual NF Symposium in Houston. It was terrific! I saw friends that I haven’t seen in years. And I met lots of wonderful people that had NF or had someone in the family with NF. I feel blessed to have met them. I guess you could say, I have new friends to email. I was really impressed with how much you can get out of meetings like today. I look forward to the next one. Maybe I can see all of you that I didn’t see today. If you missed it, stay tuned. I may have a few surprises soon. VIDEO LINKS OF PRESENTATIONS COMING SOON!!!
CLICK HERE TO SEE SYMPOSIUM PHOTOS!!!
I just got home from visiting my friends at Fire Station #59 on 13925 S. Post Oak at Prudence, in Houston!
All I can say is wow! It was TERRIFIC!!
The men and women at Station 59 really helped my family out during my brother Ronnie’s illness and I am so appreciative of the help and compassion they provided!
Just know that you are never alone when you have incredible people like these guys just a phone call away!!!
God bless you, all of you!!!
I want to share the fun I had today with friends at STANANDLOU Advertising.
Today was picture day!
We are showing how much fun you can have with the right people and the right clothing!!! Yeah, the shirt had a lot to do with it.
Maybe if we get a lot of bloggers and you demand that everyone at the office must wear the JUST ASK shirt as a policy we can promote more fun in the office while raising awareness for NF. Lets start blogging. Say, “Hey Lou, Reggie is right. I like the idea!”
Lou, by the way, nice hat!
Hello Reggie- My friend, Melanie told me about you and me must say I am very impressed with your resiliency and the battle we all have with NF. My name is Matthew 41 years young, live in New York. My mom, my 2 sisters and myself have NF 1.
I have had so many surgeries I lost count. 2 of them were extensive spinal surgeries. After my last spinal surgery, I needed just as before the surgery to use a cane and wear an AFO on my right leg and knee cage on the left. But know I must wear a KAFO on each leg and use a walker due to osteoporosis and degenerative disc disease. There are still innumerable tumors that of course cannot be removed. Continue reading