neurofibromatosis cafe

A place to talk about NF, have fun and share.

Barack Obama Doodle Earns $2,000 for NF Research!!!

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.

May 30, 2007 Posted by | Awareness, Fundraising, neurofibromatosis, Research | , , , , , , , , | 5 Comments


ottmar.jpgOttmar Liebert is one of the best flamenco guitar performers around. A friend of mine, Greg Gorman, made it possible for me to be to at one of Ottmar’s performances at Rockerfeller’s in Houston. Mom and I had a terrific time. After the performance Ottmar was nice enough to take time to talk with me and take photos. He even signed one of his CD’s for me. If you like the flamenco guitar or New Age type music, you will enjoy Ottmar’s music. I have a link to his site as well as my friend Greg Gorman. I am happy to call both of them my friends.

May 30, 2007 Posted by | About Me, Appearances, Friend, Friends, Fun, Links, Music, neurofibromatosis, nf, NF1, Photos | , , , , , | Leave a comment

This is a PSA I did for the Texas NF Foundation

Neurofibromatosis poster with Reggie BibbsI 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.

May 30, 2007 Posted by | neurofibromatosis, Texas NF Foundation | , , , , , , | 7 Comments

Kay has neurofibromatosis (Video)

Meet Kay. She has neurofibromatosis.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.

May 27, 2007 Posted by | Awareness, neurofibromatosis | , , , , | 2 Comments

Laundry Day Book Proceeds benefit CTF – The Children’s Tumor Foundation!

Jacquie Rogers

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

May 27, 2007 Posted by | CTF.ORG, Fundraising, neurofibromatosis | , , , , , | Leave a comment

Boy with neurofibromatosis brain tumour defies the odds

(Reprinted from the Standard Freeholder, Ontario, Cananda)

Devon - Boy with neurofibromatosis brain tumour defies the oddsBoy with brain tumour defies the odds

Trevor Pritchard
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

May 26, 2007 Posted by | neurofibromatosis, News | , , , , , , , , , | 3 Comments

Meet Reggie Bibbs & neurofibromatosis (Video)

Meet Reggie Bibbs & neurofibromatosisReggie Bibbs discusses his life growing up with neurofibromatosis and how people react differently to him since launching his “Just Ask” campaign.


May 25, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, neurofibromatosis, Video | , , | 1 Comment

Hunter has neurofibromatosis (Video)

Hunter Cavanaugh has neurofibromatosisMeet 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.

May 23, 2007 Posted by | neurofibromatosis, Video | , , | Leave a comment

Minerva and Robert Terrill’s Story (Video)


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

May 22, 2007 Posted by | Friend, neurofibromatosis, Texas NF Foundation | , , , , , | 5 Comments

Disfigured man with neurofibromatosis launches “Just Ask!” campaign!

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!

read more | digg story

May 21, 2007 Posted by | neurofibromatosis | , , , | 22 Comments

Reggie Bibbs – “This is NF”

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!

read more | digg story

May 21, 2007 Posted by | neurofibromatosis | , , , | Leave a comment


charles-reggie-bob.jpgI set up an Flickr account for Texas NF photos and I would like people to go to Flickr and upload your favorite photos. Or if you don’t know how, you can send them to me. I will upload them for you. Here is the link.

Maybe you have pictures from camp you want to share. Or maybe a support group. I hope to see your photos soon.

May 21, 2007 Posted by | A MESSAGE FROM REGGIE, Links, neurofibromatosis, News, nf, NF1, Photos | , , , , | 5 Comments

Texas NF Foundation, NF Family Camp, September 7-9, 2007

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

May 20, 2007 Posted by | Favorite Places, Friends, Fun, neurofibromatosis, Texas NF Foundation | , , , , , , | 5 Comments

Please go to and say you “Dig It!”

newscastI just posted the FOX 26 interview about the “Just Ask!” campaign to Digg, an online video news site that is very popular in the blogger world. A video that does well here gets passed around the world very quickly and helps show up higher in the search engine world. If you could take a moment to go to and watch the video and click on “Digg It” it would help this site show up higher in Google when you search for neurofibromatosis. Thank you for any help you can give!

May 19, 2007 Posted by | Awareness, Fun, Links, neurofibromatosis, News, Video | , , , | 2 Comments

An excerpt from NeuroTalk Support for people with neurological disorders and diseases

“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

NeuroTalk Communities

Continue reading

May 19, 2007 Posted by | Help, neurofibromatosis | , , , , , | 1 Comment

Watch the history of the Texas NF Foundation Video!!!

Texas NF Foundation 15th Anniversary VideoI have a terrific video for all of you!

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!

Click here for the link to the Texas NF 15th Anniversary Video!

Continue reading

May 18, 2007 Posted by | Awareness, Friends, Fun, Fundraising, neurofibromatosis, Texas NF Foundation, Video | 4 Comments

NF obituary from today’s Bethel Beacon in Connecticut.

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.

Continue reading

May 18, 2007 Posted by | neurofibromatosis, News | 1 Comment


Reggie Bibbs/MohawkLou and I went to the Art Car Parade yesterday and met some crazy, wonderful people including the legendary George Clinton, Mayor Bill White, The Roller Derby Girls and Wednesday, my favorite day of the week and belly dancer!

We took photos of the coolest cars and people we came across during the Art Car Parade. Environmental EncroachmentRules!

Lot’s of really fine cars but they couldn’t hold a candle to all of the people we met and took photos with! Hope you enjo and to all of you who we met this weekend, thank you for making it such a wonderful experience!


May 13, 2007 Posted by | A MESSAGE FROM REGGIE, Appearances, Awareness, Favorite Places, Friends, Fun, neurofibromatosis, Photos | 9 Comments

We endorse the The Fight For Federal Funding For NF Research Petition to U.S. Congress. SIGN PETITION BELOW

To: U.S. Congress

Neuro-fibroma-tosis. Have you ever even heard of it? Probably not, even though it is the most common neurological disorder affecting 1 in 3000 people. Neurofibromatosis (NF) is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time.

NF affects all races, all ethnic groups and both sexes equally. And as of yet, there is no known cure for NF.Clinical drug trials are being conducted by ten major hospitals called the “NF Clinical Trials Consortium”. With these trials comes the hope of accelerating drug development.

SIGN PETITION Continue reading

May 11, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Fundraising, neurofibromatosis, NF1, Texas NF Foundation | 6 Comments

My favorite Mexican Restaurant – Tila’s Restaurante and Bar on South Shepherd in River Oaks!

Arthur Meyerson, Lou Congelio and I stopped at Tila’s on Friday for lunch.Arthur Meyerson, Lou Congelio and I stopped at Tila’s on Friday for lunch and had one of the most incredible meals know to man or woman. The service was great and we were made to feel very special. Thank you all!

More photos!

May 10, 2007 Posted by | A MESSAGE FROM REGGIE, Favorite Places, Friends, Fun, Links, neurofibromatosis, Photos | 10 Comments

Philanthropy World Profiles Texas NF Foundation by Bob Hopkins

Bob HopkinsThe 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, garageKathy Price and NF board members 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

May 10, 2007 Posted by | neurofibromatosis, Texas NF Foundation | 9 Comments

May is National NF Awareness Month!!!

Neurofibromatosis: New Research, Clinics Offer Hope


logo-default.jpgNewswise — 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 9, 2007 Posted by | CTF.ORG,, neurofibromatosis, News, NF1, Texas NF Foundation, Uncategorized | 15 Comments


Elizabeth Bertrand during Dr. Slopis Q&AThe NF Symposium was terrific! I want to talk about how I felt meeting so many new people I can now call my friends. At the symposium, one of my new friends purchased five of my shirts in support of my JUST ASK campaign. I received tons of wonderful messages on the Children’s Tumor Foundation bulletin board. I’m happy to be a part of the board and meeting new friends. You can see from the photo the three of us are happy campers.

May 9, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Friends,, neurofibromatosis, News, NF1, T-shirt | 1 Comment


Lou and Reggie BibbsLou and Reggie Bibbs #2

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!

May 9, 2007 Posted by | About Me, Friends, Fun, neurofibromatosis | 14 Comments


Cindy Hahn and Reggie Bibbs, Texas Neurofibromatosis FoundationFor 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!!!

SEPT 7 – 9, 2007
Burton, TX

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:/

May 7, 2007 Posted by | Friends, Fun, neurofibromatosis, News, NF1, Uncategorized | 10 Comments


Texas NF Foundation SymposiumToday 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!!!


May 5, 2007 Posted by | Friends, Fun, neurofibromatosis, News, Texas NF Foundation | 11 Comments


This should be a terrific! weekend. The Texas NF Foundation is having a NF symposium in Houston. To he held at Texas Children’s Hospital. I will be there in hopes of meeting you that have ask will I be there. Its really exciting to meet more people who are wanting to find a cure for our disorder. Hope to see you all there. Who knows, I may have a few questions for you. 🙂 It will be fun. Plan to enjoy your self. I know I will.

May 4, 2007 Posted by | A MESSAGE FROM REGGIE, Friends, Fun, neurofibromatosis, News, Texas NF Foundation | 2 Comments


Heroes at Firestation 59!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!!!

May 3, 2007 Posted by | Friends, neurofibromatosis, Photos, Ronnie | 9 Comments


I want to share the fun I had today with friends at STANANDLOU Advertising.

Today was picture day!

Reggie Bibbs at STANANDLOUReggie Bibbs at STANANDLOU #2We 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!

May 2, 2007 Posted by | About Me, Friends, Fun, neurofibromatosis, T-shirt | 21 Comments

“I love life and each day is a gift.” – Matthew

Reggie Bibbs at first Astros game EVER! 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

May 2, 2007 Posted by | Friends, neurofibromatosis, NF1 | 3 Comments