neurofibromatosis cafe

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

RODEO OPENING NIGHT FEATURING GEORGE STRAIT!!!

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For all of our fans of Rodeo Houston, are excited about opening night for the 75 year of The Houston Live Stock Show and Rodeo in Houston. Well for all of the fans of George Strait fans, I think we are out of luck. I hear tickets are sold out. But of course it would be, it’s George Strait.

All of the George Strait fans, say yee haw . Let us know how great the show turned out. Anyone who loves country music will enjoy the show with out a doubt.

Did I mention I was a George Strait fan?!! Let’s rodeo!!! Continue reading

February 27, 2007 Posted by | Music, RODEO | , , , , | 6 Comments

FREE HUGS


freehugs1.jpgI had several topics that came to my mind that I wanted to post. I’ll stick to one for now. What’s on my mind today ? FREE HUGS. I just saw a video on YOUTUBE. My video is on the same site. I saw the video and it literally made me want to cry. I was impressed how many of us just would be happy with a hug.

I know were I can go to get a hug, when I need one two or three. You know who you are. I really thank you for that. How many of you believe a hug can make a difference of your day? Watch the video free hugs. Post how you feel after you dry your eyes. Here’s the link http://www.youtube.com/watch?v=vr3x_RRJdd4

February 26, 2007 Posted by | Video | , , , , | 10 Comments

Reggie Bibbs receives Gold Addy Award

Feb. 22, 2007, 10:15PM
Reggie Bibbs receives Gold Addy Award
Second Baptist Church member honored for advertising campaign

By KIM HUGHES
Chronicle Correspondent

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Reggie Bibbs, a member of Second Baptist Church on Woodway, was looking fine in a suit and tie recently when he went on stage to receive a Gold Addy Award for his advertising campaign to raise awareness of a disfiguring disorder called neurofibromatosis.

It was a dressy affair at the Hyatt Regency Hotel downtown, which is why Bibbs, 42, wasn’t wearing the T-shirt that won him the award.

On the front is an abstract outline of Bibbs’ face, and on the back are the words “Just Ask.”

“I can see how people look at me, and they will just stare,” said Bibbs, who was diagnosed with neurofibromatosis as an infant, and has several tumors on his left leg and face.

“Some of them look at me like I’m an apparition. You can see they want to ask — but they don’t — and it puts both of us in an awkward position.

“I want them to know it’s okay to ask me what’s wrong (with me).”

Originally from Houston, and still living in the same house he in which he grew up, Bibbs said his mother first noticed something was amiss when she would try to put his shoes on his little feet.

His left shoe just couldn’t go over his foot very easily, and he would cry whenever she tried.

Bibbs was diagnosed with neurofibromatosis when he was about 1-year-old.

According to the National Institute of Neurological Disorders and Stroke at www.ninds.nih.gov, neurofibromatosis affects an estimated 100,000 Americans and occurs in both sexes and all ethnic groups.

It’s a genetic disorder of the nervous system that causes tumors to grow, and can produce other skin abnormalities and bone deformities.

“They told her there was no cure for it, and the only thing they could do was follow me,” Bibbs said.

He was fitted with special shoes, and Bibbs has since undergone about 10 surgeries to remove tumors from the roof of his mouth, his leg, nose and eye.

Bibbs said surgery is not usually a recommended course of action, because doctors believe removal of existing tumors propagates growth of new tumors.

Growing up, Bibbs said his five brothers and sisters were protective of him, and he knew at a very early age there was something different about him.

“I knew my eyes did not look like my brothers’ eyes, I knew I couldn’t see very well out of the one eye,” Bibbs said.

“Different parts on me were bigger. And as I grew, the tumors grew.”

Bibbs recalls the day, when he was about 10, when his brothers were tromping through mud puddles, leaving bare footprints on the sidewalk.

“My footprints, one would be the regular size and the other one would be really big,” Bibbs said.

“I would wish I could make the same kinds of footprints everyone else was making.”

Bibbs learned to accept and love himself, with the help of his mother, siblings and neighbors.

“We did a lot of praying and trying to encourage Reggie to just not worry about it,” said Dorothy Bibbs, 70.

Reggie and Mom in “Just Ask!” t-shirt.

“He always had someone with him wherever he went, and the neighbors were very helpful. They didn’t see him as having a deformity.”

Bibbs also credits his faith for getting him through.

“I know that God has really blessed me in so many ways, that I cannot begin to really express it,” Bibbs said.

“He has given me strength just to go on, and I have met so many wonderful people.”

That includes Gary Moore, senior associate pastor.

“Reggie is so faithful and he’s always here,” Moore said. “You look out there, and Reggie’s just out there smiling.

“Faith points you to a different life, and he is an opportunity for people to show what they’re really made of.”

But Bibbs said not all people can see past the physical.

“Just recently I was driving along, dropping my nephew off at the bus stop, and I was at a light,” Bibbs said. “I happened to glance over to my left, and I see a car full of guys laughing.

“I was just shocked. I don’t understand why someone would laugh. I can understand if someone is afraid or curious or something like that. But laugh? I just don’t understand that.”

If you see him, he said, don’t laugh, he said. “Just ask.”

Reggie Bibbs

• Age: 42

• Community connection: Member of Second Baptist Church on Woodway

• Fast fact: Bibbs recently received a Gold Addy Award for his advertising campaign encouraging people to “Just Ask”

• Quick Quote: “I thought his T-shirt idea was brilliant. He’s trying to answer a question before the question is even asked” — Lou Congelio, owner of STANANDLOU Advertising, 1001 West Loop South.

Info: For more information: www.reggiebibbs.com , or e-mail reggiereggiebibbs.com

Link to article in chron.com

February 26, 2007 Posted by | ADDY Awards, neurofibromatosis, News | , , , , , | 7 Comments

SIGHT LIKE A BAT

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I thought this would be a fun post. I would like to know if any of you had similar problems. I didn’t think about until a friend brought it to my attention. I drove over to a friends house just after dark. I found it like I was driving to where I live with my mom. No problem at all. So, guess what happen when I went to my friends house around noon? You guessed it. I couldn’t find it. I passed his house three times. It would have been four times, if he had not chased the car down yelling my name. Now how crazy is that? My friend and I laughed about it most of the day. I just did not see the house.

February 25, 2007 Posted by | About Me | , , | 4 Comments

RODEO HOUSTON PARADE

The Rodeo Houston Parade is going on now. I’am not able to be there this time. Thank goodness its on Television. I can enjoy it just as well. It seems to be going very well, and I can see everyone there is having a enjoyable time. Lots of smiling faces. WOW! Really looks fun. I wonder how many of my friends are there having fun. I know as least one of my personal friends will tell me all about it. I would love to hear from all of you that attend the Parade today.

February 24, 2007 Posted by | RODEO | 2 Comments

TEXAS TRAIL RIDERS MOSEY INTO MEMORAL PARK IN HOUSTON

Hello Friends, I was one of the lucky Texans, who saw the trail riders come to town. It was a great sight. Everything western. The weather wasn’t the best, but it was good for the trail ride. All of the riders seem to be happy. Did any one else see the riders enter town. Post about it? I would love to hear from you.

On another note, Please let me know If you have not received a reply from me. All of the email has made a difference in mylife. I am learning so much from all of you.

February 23, 2007 Posted by | RODEO | , , , | 6 Comments

HOUSTON CHRONICLE ARTICLE!!!

Great news! Kim Hughes of the Houston Chronicle called on Tuesday wanting to interview me for an article in the paper. I said sure, you bet! So she asked me a lot of questions about growing up, the website, the “Just Ask” t-shirt and it was really fun. And she was just wonderful! If Kim is any indication of the type of people who work for the Chronicle, I’m going to be a lifelong subscriber.

But there’s more.

I just finished a photo session for the Houston Chronicle at my house. The photographer, Clayton R. McKee, was real nice and made me feel very comfortable. He took photos of me and my Mom in our “Just Ask!” t-shirts, me playing pool and stuff like that.

I am not sure when the article is coming out but you can be sure that when it does, I’ll post it here! Thank you all again so much for your support. I am truly blessed to have so many wonderful friends!

Write me and let me know how you are enjoying the site.

February 22, 2007 Posted by | neurofibromatosis, News | , , , , , , | 4 Comments

TIME TO RODEO

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Well, we are talking rodeo again. Kick off is today, I believe. I’m excited and expecting this will be a good year. I don’t know if I will be able to go, but who knows. The schedule has a great list of country entertainers and other great entertainers for all of you who are not country music fans. I would like to hear from all of the fans who plan to see someone from our home town–Clay Walker. And I know my good friend here would love to here about it. After all, he will get me a picture of ASLEEP AT THE WHEEL. He is such a cool guy. Right Lou?

February 21, 2007 Posted by | Music, T-shirt | , , , , | 8 Comments

Neurofibromatosis, Inc.

NF Inc
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What is NF?

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births).

NF has two genetically distinct forms: NF-1 and NF-2. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for either form of NF, although the genes for both NF-1 and NF-2 have been identified.

NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children.

Joseph Merrick, whose condition was depicted in the play and film, The Elephant Man, is often incorrectly thought to have had neurofibromatosis. Merrick’s condition has been identified as Proteus Syndrome, a disorder similar to NF, but unrelated. To learn more about Proteus Syndrome, please visit the Proteus Syndrome Foundation’s website.


  Neurofibromatosis, Inc.
P.O.Box 18246
Minneapolis, MN 55418
Phone: (301) 918-4600
1- 800-942-6825

February 20, 2007 Posted by | neurofibromatosis | , , , | Leave a comment

I AM OVERWHELMED

I am overwhelmed by the outpouring of support that I have received from the Fox News Broadcast. Thanks for your encouragement. My email box is overflowing with all of your kind words and thoughts and I am still answering every one of them. So I may be a little slow updating my blog so please bear with me. I really feel great about people being so open with me and explaining how they feel about the newscast, NF and me. It’s wonderful feeling normal! Thank you all so very, very much!

February 20, 2007 Posted by | About Me, neurofibromatosis, News | , , | 16 Comments

FOX26 NEWS INTERVIEW WITH DAMALI KEITH

Tonight I hope you can join me and watch my interview, on FOX26 NEWS. It should air around 9:00pm I was happy that FOX26 gave me the air time, so that I can share my story. Damali Keith interviewed me and was very nice. Like I always say, “Make it a Tremendous Day.” I look forward to your comments.

February 19, 2007 Posted by | About Me, News | , , , , , , | 34 Comments

MORE ON THE RODEO

After my first blog on country music a few days ago, I remembered my first Rodeo in Houston. I would like to know… Do you remember your first Rodeo? Write and tell me about the experience. Who did you see ? How many of you remember Casey and the Sunshine Band. That’s the group I saw. They had a popular single at that time. It was in the 70s. My Boogie Shoes. Yes that is right. My Boogie Shoes.

February 19, 2007 Posted by | Music | 6 Comments

THE WINNER IS……

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Last night was the 45th Houston Advertising Federation ADDY Awards. It was a terrific! night. I’s a big deal for me. I thank all of my friends that helped make this happen. You know who you are. I wasn’t the only one there. If you were at the event, please let me hear from you.

February 18, 2007 Posted by | ADDY Awards, neurofibromatosis | , , , , , | 8 Comments

Houston Livestock Show and Rodeo

A great time for me. That’s right. The Houston Livestock Show and Rodeo is celebrating its 75 year Anniversary. Alright Houston! The events starts February 27th. If you are going to see George Strait (to name just one of the good performers who will entertain us), start thinking about getting your tickets early. I hope to be one of the lucky souls that will attend. Any of the country performers will work for me. Who’s going to the Rodeo? Who will you see? I know there will be good stories to share.

February 16, 2007 Posted by | Music | , , , | 5 Comments

ADDYS THIS WEEKEND

The ADDY Awards program will be this weekend. I will be there, with crossed fingers. I hope to be one of the recipients of these great awards. Although I have been lucky enough to attend a few years ago, I still feel a little nervous about the big day. If I don’t win this year, it’s OK. I know I will enjoy myself. I look forward to meeting new people, who I know will become new friends to me. Wish me luck, but don’t say “break a leg.” I only have one good leg. k. Any one have ideas on how to get over the nervousness?

February 15, 2007 Posted by | ADDY Awards, neurofibromatosis | , , , , , | 4 Comments

VALENTINE’S DAY

FYI. I have been reading and this is what I found on Valentine’s Day. There are many opinons as to who was the original Valentine, with the most popular theory that it was a clergyman who was executed for secretly marrying couples in ancient Rome. In any event, in 496 A.D. Pope Gelawius set aside February 14 to honor St. Valentine became a patron saint lovers. In the 1840s, Esther Howland, a native of Massachuestss. is given credit for sending the first Valentine cards. The spitrit of love. continues as valentines are sent with sentimental verses and children exchange valentine cards at school. I saw a lot of people buying Roses. Are you one of them? What do you think about this day, what would make Valentine’s Day special for you?

February 13, 2007 Posted by | Valentine's Day | , , , | 7 Comments

Country Music

I enjoy country music. As you may have seen from my Website, I have been lucky enough to meet one country music peformer, Kenny Rogers. I treasure the pictures that I have of Kenny Rogers, Gary Morris, and me.

Who would I like to meet? Well, to name a few: Dolly Parton, the Oak Ridge Boys, and Clay Walker.

Today, I would hope to hear from all of you. If you are a country music listener, share with me who you have met and what your experence was when you met him or her.

Make it a tremendous day.

Reggie

February 11, 2007 Posted by | Music | 14 Comments

EXPRESSING THROUGH WRITING

Today my family went to a Memorial Service for my brother Ronald Bibbs who died last September. It was held at Houston’s Odyessy Healthcare, the organization that took care of Ronnie when he was very sick. They did a terrific job in comforting us in that low point in our lives. Today we met a lot of people who lost someone they loved. When I saw all the people, I didn’t feel so alone. I knew then that others are hurting also. I though about a lovely song. CRY OUT TO JESUS. (THIRD DAY). The words in the song gives me comfort. I’m learning it helps to talk to your friends you have in your life now. And start enjoying every moment you have with your friends. One other thing that is helping me is expressing myself in writing. If anyone have tips that can improve writing skills or if you like to write. I would love to hear from you.

February 10, 2007 Posted by | Ronnie | 3 Comments

Neurofibromatosis

Today I had a Terrific Day! I went to Discount Tire. There was a nail in my tire, and I needed to buy a new one or have the old one patched. This is something I must work on: not to expect everyone to have a negative reaction to me. Usually I don’t feel that way. There are times I do not. When someone treats me nicely, it gives me a wonderful feeling. It makes me want to write a letter to the company and tell them about myself, and what great employees are working for the company. I must remember they are doing their job. They are treating me the way I want to be treated (a good customer). Please leave me your thought on this.

February 9, 2007 Posted by | About Me, neurofibromatosis | 6 Comments

Addy Award Nomination

Guess what!

Lou Congelio just called me. He is president of STANANDLOU Advertising, the agency thatreggiebibbswhoami2.jpg helped me develop this Web site. This site has been nominated for an Addy award and the awards ceremony is on February 17. Lou and I are invited to a dinner and an awards presentation.

I am really excited about the nomination. Winning would be a great honor, not just for me, but for everyone else who has NF. People with NF and other disfiguring conditions find it difficult to do everyday tasks, and this site increases public understanding of the hurdles that we have to overcome.

Thumbs up If we win, I will accept the award on behalf of Ronnie, my brother who had NF and cancer. He died in September of 2006, and I miss him a lot. One of the benefits of this site is to tell everyone that people with NF may be susceptible to developing cancer. NF itself is not life-threatening, but if you have it, you need to be in the care of a physician and alert him or her if anything changes about your condition.

Do you have NF? Do you know of someone who does? If yes, tell me your story. I will be thinking about you at the awards ceremony.

February 7, 2007 Posted by | ADDY Awards, neurofibromatosis | 7 Comments

Just Ask!

Wherever I go, I wear a shirt that says, “Just Ask.” Even though I am wearing the shirt, people still hesitate to talk to me—they do not want to be insensitive.

From the time we are kids, we are told not to ask questions. Children stare at me and say “What happened?” and their mothers hush them. They will grow into adults like many I know who are afraid to talk about my condition—afraid they might hurt my feelings. I don’t mind questions. I am an outgoing guy and I really want you to know about me.

Do you want me to know about you? Write to me. I’d love to hear from you.

February 7, 2007 Posted by | neurofibromatosis, T-shirt | 5 Comments

Some People

Yesterday, I took my nephew to the bus stop. We stopped at a traffic light. You know that feeling you get when someone is looking at you? I felt that. When I look to my left, I saw a car with four people looking at me laughing.

I was bewildered. Why is someone’s outward appearance funny? I can understand a person being afraid to look at me, but to think I am funny? I do not understand.

Has this ever happened to you? If it has, I am really sorry. Please write and tell me about it. Believe me; I will sympathize with how you feel.

This Web site will be good because we can encourage people not to look at our outward appearances, but at our hearts.

February 7, 2007 Posted by | Appearances, neurofibromatosis | 6 Comments