A doodle by Senator Barack Obama sold for over $2000 on eBay today. The drawing, featuring fellow senators Harry Reid, Dianne Feinstein, and Edward Kennedy, was sold as part of the National Doodle Day initiative. National Doodle Day sells celebrity sketches to raise funds for Neurofibromatosis, Inc.
I can’t remember the year we shot this but I do remember that it won a national award in the Public Service category at the American Advertising Federation’s ADDY Award in Las Vegas. Gordon Jump, the Maytag repairman in commercials and Mr. Carlson fom WKRP in Cincinnati fame gave out the award that year. Lou had worked with him before and says he was the nicest guy in the world. He was a Mormon and died several years ago.
Meet Kay from the U.K. (full interview)
WellChild meets a young girl called Kay, who has a condition called neurofibromatosis otherwise known as NF1.
Children’s health videos from WellChild. Information, advise and stories about children from the UK children’s charity. Registered charity number 289600.
WellChild produces a range of videos spanning children’s health. WellChild is the single point of reference for all children’s health, for children and families.
People have been washing clothes (or furs) for a long time. Most sites say that humans finally got a clue that good hygiene made for better health. I’m of the opinion that people liked to be comfortable then as now. Their skin chafed and got rashes just like ours does, so it stands to reason that they’d want to rid themselves of particulate matter just as we do. Take a look P&G’s overview of laundry methods from prehistoric times until the present for good information on products used, and when.But, lazy person that I am, I’m more interested in gadgets, so let’s start a little later in the game…say, the 1800s. Continue reading
(Reprinted from the Standard Freeholder, Ontario, Cananda)
Local News – Saturday, May 26, 2007 @ 08:00
On the rare occasions he’s not giggling or laughing, it’s apparent five-year-old Devon Payette’s speech is slightly garbled.
His bright red hair is shaved close to his skull, where he has a four-inch scar, and he stumbles slightly as he walks – possibly the result of being blind in one eye. Continue reading
Meet a brave 5-year-old boy battling neurofibromatosis mistakenly thought to be “the elephant man’s disease.” But we all know John Merrick had proteus syndrome. Hunter has NF.
Raising awareness of the disease their daughter has been fighting since she was 4 years old has been a top priority for Minerva and Bob Terrill of Dallas. Denise Terrill, now 29, has neurofibromatosis, a disease that has caused tumors to grow along her central nervous system, severely damaging her brain stem.
Dr. Bob Terrill, Denise’s father and a dermatologist, diagnosed his daughter’s disease when she was a toddler. Since then, Denise has endured 18 major surgeries, the first of which occurred in 1990 and resulted in her hearing loss. Confined to her bed for almost 10 years, she has lost sight in one eye. She requires a ventilator to breathe and receives nourishment through a feeding tube. Continue reading
Reggie Bibbs has lived with neurofibromatosis (NF) all his life. NF causes tumors to grow throughout the body sometimes causing pain, disfigurement and even death. Because of his disfigurement, Reggie has led a fairly sheltered life leaving the house only to go to places where people knew him. Well, until now!
Reggie Bibbs, Houston, Texas, has neurofibromatosis. In this fun and informative 60-second television public service announcement, Reggie explains what it’s like living with neurofibromatosis but, more importantly, how he lives with it. He is funny, upbeat and very courageous. An inspiring video made by an inspiring man!
NF FAMILY CAMP, CAMP FOR ALL
SEPT 7 – 9, 2007, Burton, TX
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. Continue reading
“Hi, My name is Camrin, at 15 years of age I was diagnosed with neurofibromatosis type 1. Neurofibromatosis is small tumors on your head or other areas of the body. Some of the symptoms might be brown spots throughout your entire body similar to birth marks. After the doctor diagnosed me with that I also had anxiety problems. I was than put on medicine called paxil. The teachers new that I was on it and they used to ask me if I took it or not. Sometimes, I would say yes and other times I would say no. I didnt like being on anxiety medicine because it made me feel so stupid.” white_lilies2445
About 10 years ago, I was asked to help participate in a video detailing the history of the Texas Neurofibromatosis Foundation. Our 15th Anniversary was coming up and Bob Hopkins, the Executive Director at the time, wanted to recognize the people who brought us to where we were while also helping educate the new trustees, volunteers and patients about the history of the foundation and all of the ground-breaking work we helped initiate.
I’ve just watched it for like the 100th time and I’m still learning more stuff!
Zowine’s accomplishments, not illness, recalled
By: B.J. O’Brien
(Reprinted from website of Bethel Beacon)
Henry Zowine, a lifelong Bethel resident, might have had a disability but he didn’t let that stop him from accomplishing a great deal in life.
Mr. Zowine, who suffered from neurofibromatosis, died Saturday at his home in the presence of his family. He was 45 years old (see obituary, Page 7).
Neurofibromatosis affects the brain, spinal cord, nerves and skin. Those affected by it get tumors on the nerves in their ears, which causes hearing loss and eventual deafness. They can also have problems with balance. The disease can also cause the loss of eyesight.
Neurofibromatosis is a genetic disease. Mr. Zowine’s son Zack, 16, also died from it a few months ago.
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!!!
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!!!
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!
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
- 2008 Houston Highlights
- A MESSAGE FROM REGGIE
- abc news
- About Me
- ADDY Awards
- Astros Game
- Denise Terrill Golf Classic
- Emily's Name-My-Baby Contest!
- Favorite Places
- Friends of NF
- Friends with NF
- Greg Gorman
- Houston Art Car Parade
- houston astros
- houston livestock show and rodeo
- Houston Roller Derby
- Houston Texans
- International Festival
- Laurie Selzer-MNI
- M.D. Anderson
- Martina McBride
- McKee Street Bridge
- Medical Resources
- national doodle day
- NF Bulletin Board
- NF in the News
- nf inc
- Porch Swing Pub
- Some People
- Texas NF Foundation
- TEXAS RENAISSANCE FESTIVAL
- Valentine's Day
- Web Technology