neurofibromatosis cafe

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


Reggie Bibbs First Ever Astros Game!!!WOW!!!!!!!

What can I say but WOW!!!!!

I have always wanted to watch the Astros in person but was always afraid to be in crowds among people I thought would be afraid of me or not want to be around me. I WAS SO WRONG!!! I had the best time of my life!!!! I felt like I was surrounded by friends and I have to tell you, that doesn’t happen very often.

Thank you, all of you who came up to me and said hello and took pictures with me. You have no idea what that simple act of kindness meant to me.

It was the greatest day of my life!

I want to send an extra special thank you to Amanda Ludeke, on-air personality at Sports Radio 610. Thank you for introducing yourself to me. Thank you for making me feel so special.

And thank you Jay Sitta of CBS Outdoor for the incredible tickets!!! You guys rule!

April 30, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Astros Game, Friends, Fun, neurofibromatosis | , , , , , , , | 5 Comments

Reggie Bibbs First Ever Astros Game!!! Photos Now Online!!!


Welcome to Minute Maid Park!


Thank you to all the new friends we made today at Minute Maid Park!!! What a Tremendous Day!!! Thank you all who came up and introduced yourself to me! You really made my day!!! Continue reading

April 29, 2007 Posted by | A MESSAGE FROM REGGIE, Astros Game, Friends, Fun, neurofibromatosis, Photos | , , , , , , , | 7 Comments


Do you think the Heritage Building makes me look fat?Hi Everyone,If you are visiting this blog for the first time, welcome!

The purpose of this blog is to serve as a meeting place for people who have NF, or who knows somebody with NF or is just interested in learning more about NF. But no matter how we are connected to NF or this blog, I know we all share the same goal: to find a cure. Continue reading

April 28, 2007 Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Links, neurofibromatosis, News, Texas NF Foundation | , , , , | 14 Comments


My Friends at Fiesta!Here are a few friends from one of the grocery story I love to shop, Fiesta. Everyone here is really nice. I ‘m here with the managers of the store, Curtis and Linda. It’s at South Main and Post Oak.

If you live in the area of this store, please stop and say hello to these nice people. Let they them know they are making a difference in the community they serve.

It’s sometimes very difficult going to new place where people don’t know you or are unfamiliar with neurofibromatosis. Nice people like Curtis and Linda make it very, very easy to live a “normal” life. They give me the courage and confidence to reach out to others about neurofibromatosis.

April 27, 2007 Posted by | Friends, Fun, neurofibromatosis, Some People | , , , | 9 Comments



I just wanted to drop you a line and say how great you are! I have NF1 too and although it’s not too severe other members of my family have it pretty bad. Having the disease isn’t fun and the tumors cause a lot of pain. It doesn’t help that doctors over here in the UK know so little about it, I feel I’m teaching them sometimes! It’s put me off having children so I think I’ll stick to dogs!
I saw your video on You Tube and had a look at your website. It’s very cool and I loved the photos too. You have a gorgeous family and a good group of friends.
If one thing NF has taught me it’s never to judge anyone on the way they look and I get so mad when I see it happen on the tv or in the street. Anyway, congratulations on all that you have achieved and for making people more aware. You are an inspiration!


Best wishes,


April 27, 2007 Posted by | Appearances, Friends, neurofibromatosis | , , | 7 Comments

The Children’s Tumor Foundation is talking about us!!!

ctf-logo-bb.jpgA friend sent me this link and I was blown away!!! They’re talking about me and my website. Here’s the link to the discussion group. I’m going to respond to their questions today! Maybe you can join me and help me out. Please?!! The Children’s Tumor Foundation is one of the leading organizations in the world involved in neurofibromatosis research and treatment.;f=1;t=008133

April 26, 2007 Posted by | neurofibromatosis | , , , | 9 Comments

This is what gets me excited!!!

reggiebw.jpgHey Reggie!

You’re doing awesome work brother. I was diagnosed with NF from birth and I’m very thankful for what you’re doing. I always felt like I was alone until a few years ago I’ve found some really awesome NF friends. (one of which shared your video and site with me) Congrats on your awards. I plan on buying one of your shirts when they go for sale.


April 26, 2007 Posted by | A MESSAGE FROM REGGIE, Friends, neurofibromatosis | , , | 5 Comments

A Letter from Suzanne Miller – President of Texas NF Foundation


A heartfelt thanks to our Neurofibromatosis (NF) families, doctors, volunteers, board members and donors for making the foundation a home for patient support and research for the past 25 years. You have made a difference in the most tangible, human way.

If you are new to the foundation, you have picked an important time to learn more. The year 2007 holds real promise for NF patients who have been told for decades to live with a crippling and sometimes fatal disease that has no cure and no treatment.

But critical research is going to clinical trial as I write this letter with signs that tumor growth can be stopped and implications that are enormous for both NF and cancer patients.

To ensure this kind of research continues, several NF foundations from around the country came together in D.C. this month to lobby Congress for continued research money. We are asking for $20 million in 2007 to continue the momentum of the $182.3 million dollars that have been invested in NF research since 1996 by our government and the Department of Defense.

I fully intend to look my son Drake in the eyes one day to tell him my husband Steve and I were part of a great big network of people who helped cure NF. I hope you will join us in whatever way you can to make that vision a reality for all NF patients.


Suzanne Miller
Texas Neurofibromatosis Foundation

What can you do?
Join us for Dining Out in Dallas on April 12.
Write a letter to your congressmen or senator asking for continued research funding
General donations
Send an NF patient to NF Family Camp

April 26, 2007 Posted by | neurofibromatosis, Texas NF Foundation | , , , , , | Leave a comment


hyderabad_gifts_cakes_blackforest2.gif mmmm cake hyderabad_gifts_cakes_blackforest2.gif

Ok, Here is one for you. I am a lover of all desserts. Cakes Pies Cobblers, and the list goes on. My question is what is the highest amount you would pay for a specially ordered dessert? How much is too much? Whether it ‘s for yourself or someone else. One time, it was years ago, on my 18th birthday I bought myself a birthday cake. It cost me $75. At that time it was a lot of money. The cake above I can handle alone.

April 25, 2007 Posted by | Uncategorized | , , , | 11 Comments


p1010002.jpgp1010001.jpgI had a TERRIFIC! day. I went to where my brother Byron is employed, Macks Transmission. I had a chance to talk to Byron for a short time. My visit was with my friend Jerry T, who works in one of the offices. Cool guy. Here I’m posting the photos of my friends that bought shirts today. But that’s not all. I also saw my doctor at MD Anderson.

Dr. Diwakar Balachandran has been very supportive of my work with nf awareness. Thank you Dr. Balachandran and Jerry!!!

April 24, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Friends, neurofibromatosis, T-shirt | , , , , , | 16 Comments


reggieweb.jpgThis just in, I’m happy to say the Reggie Bibbs JUST ASK t-shirts are ready for on-line purchase. Help us raise awareness of neurofibromatosis by buying your very own “Just Ask!” t-shirt and wearing it proudly!!!

The store is now ready to fill your order. I will personally fill all orders so order soon and often!!! Order as many as you like. They make wonderful stocking stuffers, birthday presents, bar mitzvah gifts, you name it!!!

And, as always, thank you for your support!

To order, go to and click on STORE!

April 23, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, neurofibromatosis, News, T-shirt | , , | 10 Comments


wichita_81drivein.jpgWhere are all the Drive-In Theaters? I remember growing up it was easy to find a Drive-In Theater. My memories of them are fun. Watching movies from the car with your brothers and sisters. My brother and I recently talked about this the other day. What happened to all the drive-in theater’s? Are they safe? Would you go to a Drive-In? How do you feel about them? DRIVE INS


April 23, 2007 Posted by | A MESSAGE FROM REGGIE, Fun, News | , , , | 11 Comments


the-gang.jpgI had a tremendous day at the Houston International Festival!!! I made so many new friends and ate way too much food and I couldn’t be happier. Click below to see some fun photos and all the people who came up to me to “Just Ask!”






33.jpg(Left: Angela)

April 22, 2007 Posted by | Friends, Fun, International Festival, neurofibromatosis | , , , , | 15 Comments



Today was another Terrific day. I had lunch with my friend Sebastian. It is always enjoyable to have lunch with friends. Sebastian works with Cirque Du Soleil. They are in town for the now playing show, Corteo. It is a very good show. You will be amazed at the talent displayed in the show. I will have a link for all of you that may want to see the show.

April 20, 2007 Posted by | Friends, Fun, neurofibromatosis | , , , , | 6 Comments


To all of you have have been supporting me, by your visit to my site and leaving comments on my blog. I do plan to attend the nf symposium. May 5th is the day I have marked on my calender. I would love to meet all of you that have been a part of the great things that are happening on my site. I will be proudly wearing my JUST ASK t-shirt. I hope to see you there. If you plan to attend. post it here. Looking forward for making new friends.

April 18, 2007 Posted by | A MESSAGE FROM REGGIE, Friends, neurofibromatosis, Texas NF Foundation | , , , , , , | 6 Comments



Texas Neurofibromatosis Foundation and
Texas Childrens Hospital/Baylor College of Medicine
2007 NF Symposium: Link to Education
Saturday, May 5, 2007
8:30 a.m.— 4:00 p.m.

Symposium Cost: Free

Phone: 972-868-7942 Email: / Website:

MD Anderson NF Clinic

Baylor College of Medicine

Texas Children’s Hospital


Overview: We are very excited to be able to provide the 2007 Annual Symposium to patients, their families, educators and caregivers affected by NF.

The Symposium is a full day program designed to address one of our most significant and endless concerns-neurofibromatosis.

Kids Konference
For Ages 5-10

The Kids Konference will be held on the 2nd Floor Feigin Center, just around the corner from the Howland Auditorium. It will include children as arts and crafts, games, and a clown. There is limited space so sign up today for this exciting program where your kids interact with other kids with NF and their siblings.
We will provide breakfast and lunch for the children. Lunch will be cheese pizza. Please let us know of any allergies your child may have. You are welcome to bring them their own lunch or snacks for the day. Please let us know if you will be providing their own lunch. Please put your child all their belongings. Our volunteers will show you were to register your child and you will be responsible for picking them up at the end of the conference.
Other Information
Parking and directions will be mailed with your confirmation packet. If you will be traveling out of town a list of hotels in the Medical Center will also be included in your packet.
CE Credit
The NF Symposium is approved for CPE Credit for educators. Encourage your child
Other Details
Registration will begin at 8:30 a.m.
Registration Deadline: Friday, April 20
For more information call 972-868-7942
Symposium Cost: Free
Parking Cost: $10.00
If you do register and can not make it, please call and cancel by Monday, April 30 so, we do not include you in the food count.
Breakfast/Lunch : A continental breakfast and lunch will be served.


Update on Genetic Testing in NF1 and NF2
Dr. Sharon Plon
Clinic Chief, NF Clinic, TX Children’s Hospital
Associate Professor of Pediatrics and Molecular and Human Genetics, Baylor College of Medicine

Vision and Eye Issues Associated with NF
Dr. Richard Alan Lewis
Professor, Departments of Ophthalmology,
Medicine, Pediatrics, and Molecular and Human
Genetics and Faculty Associate, Huffington Center for Aging

Research Update
Dr. John M. Slopis
NF Clinic Medical Director, MD Anderson Cancer Center
Associate Professor of Pediatric Neurology
MD Anderson Cancer Center

Tumors of the Head, Neck, and Skull Base in patients with NF1 and NF2
Dr. John S. Oghalai
Assistant Professor, Otology, Neurotology, and Skull Base Surgery,
Baylor College of Medicine
NF Patient Panel

Tentative other topics:
Dermatological Issues and Education/Behavioral

2007 NF Symposium Registration
Name: _________________________________________________________________
Home Phone:____________________________________________________________
Please provide a list of attendees for symposium on
the back of this form or separate sheet of paper if more than one person is attending for
name tags and lunch count.
Any special needs?
Please list children attending Kids Konference and their age (5-10): attach separate sheet
if needed
Please list any special needs for the children attending Kids
May we publish your name, address and phone in a directory of attendees?_________
Check if receiving CE Credit: ______CPE
List of Attendees
Please list names and addresses of those attending symposium, Use separate piece of
paper if necessary.

Please mail registration form to:
Attn: Symposium
6555 Sierra Drive
Irving, TX 75039-2479
Phone: 972-868-7942

Email: / Website:

MD Anderson NF Clinic

Baylor College of Medicine

April 17, 2007 Posted by | neurofibromatosis, News, Texas NF Foundation | 3 Comments

My Friend, Doctor and Hero – Dr. Vincent M. Riccardi


April 16, 2007 Posted by | Friends, neurofibromatosis, Texas NF Foundation | 4 Comments


caven2.jpgToday, I again went to Cavender’s. Of course if you have been keeping up with my blogs, you know it is one of my favorite places to shop. I met with Bryan Hurta, he works there.

I shared with him the reason I was there. Its because of the star treatment I always receive when I go. Everyone in the store have always given me excellent service.

Some may feel what’s the big deal? Well any one that suffers with neurofibromatosis can understand. And you can read their stories on my blog as well. They understand what its like when people don’t understand or worse, don’t even try.

It’s not always easy walking into a new environment and wondering how people are going to react to you or treat you based on how you look. Many times I feel I need to be among friends before I can go someplace new. I get butterflies. I get concerned for my friends. I feel bad for the people working there and how they might respond.

caven1.jpgAt Cavender’s I feel like I’m among my friends! I can go there alone, be treated with respect, get help like any other customer and also get a “God Bless You!” when I leave. And you have no idea how that makes me feel!

It makes me feel TREMENDOUS!

When I meet people like I have met at Cavender’s you want to acknowledge them. Thank you Bryan Hurta for your time today. I salute you all.

April 15, 2007 Posted by | Friends, neurofibromatosis | 7 Comments


redwood2.jpg redw5813.jpegredwood.jpgToday I’m writing about one of my favorite trees. Next to the Weeping Willow it would be the California Redwood Tree. From what I have read, the Redwood grows only in California? Maybe it’s true. The Redwood trees are quite large. That is one of the reasons I like it. The Weeping Willow is a great looking tree. I love the way the leaves or the branches hang. Tell me your favorite tree and why.

What is your favorite tree ? do you have one?

April 13, 2007 Posted by | Uncategorized | 2 Comments



Reggie’s lament

You may see my spots as scattered
patches of dark merely punctuating.
But I know them merged into a tattered
cloak, enveloping and suffocating.
You may see my coarse and fleshy lumps
as merely clusters of excess tissue.
Until one sweetly human gesture stumps
you: my desperate move to kiss you.
Thus I know them as negation,
a zero in the critical equation
by which to calculate my reality,
an absence replacing personality.
You may see my face as a residence
of tumors, or challenge to a noble task,
an unsolicited testament of courage.
But I want to hide, to place a distance
between us, or interpose a gilded mask,
or, better yet, deny or even purge
my face, presenting you a void, simply
the final denial of who I am or could be.
I am phantasmagoria, a specter merely,
that we both some way deny or recant.
Thus, I stand before you vague and clearly,
cloaked and masked and vacant.

Vincent M. Riccardi
Copyright © 1989 Vincent M. Riccardi



I wanted to post a poem that was written by a dear friend of mine, who was my doctor at one time.

I am so thankful to know him.


April 12, 2007 Posted by | Friends, neurofibromatosis, Texas NF Foundation | 9 Comments


Reggie and Arthur I wanted to thank all of you who are wearing my JUST ASK! t-shirt. A lot of my friends have ordered my shirts to support me in NF awareness. Dr. Vincent Riccardi, Caren and Larry Kender, Greg Gorman, Sugar Ray Leonard, Mike and Rosie Moncrief, Dr. Bartlett Moore, Dr. John Slopis , Arthur Meyerson, Meko White , Elene White, Lou Congelio ,Elena Congelio, Peggy and George Newton, and Carmen Thomas. To name a few. It’s important to me to make sure everyone know the shirts can be ordered from my website. Thank you for your support

To those of you wearing the t-shirts, are you getting any questions or comments from people about the shirt? If so what are they saying?”

April 11, 2007 Posted by | neurofibromatosis, T-shirt | 10 Comments


bluemountain.jpgHere is a picture I found that shows a reason why anyone would enjoy a vacation in Australia. It’s called Blue Mountain. Someone else wrote to me about wonderful places to visit when in Australia. If you have had the opportunity to visit, please post your experience.

Someone also mention Melbourne, a beautiful city in the suburbs. I have also seen pictures that are truly beautiful. If you see pictures, you would be surprised. Its a lot of felmiler places form well known movies. Type it in and you will see just how beautiful places Australia has to see.

April 10, 2007 Posted by | Uncategorized | Leave a comment


I wanted to post this blog in hopes of getting people talking, And to get your thoughts on this topic. Those of us that have nf, and the chaining appearance that nf may has caused. Its something you have to live to really understand. I have learned something sense my video on youtube and my website. That is, if you just put it out there, then people will except it. If we let people see who we are and explain it we will be accepted. I never thought in a million years believe that I would have my picture on a website with my picture. The acceptance that I have received from people that have nf, and those that have never heard of nf, have been a tremendous support. So I encourage you. If you have nf or not its OK. Let people see who you are. If they accept you that is TERRIFIC! If not, it’s not you that have the problem. Don’t lose out. Someone may be helped by meeting you. Give it a try.

April 9, 2007 Posted by | A MESSAGE FROM REGGIE, neurofibromatosis | Leave a comment


Commercials, what is your favorite commercial? We all have them. The one that come to mind for me is. Real Men of Genius. All of them make me either laugh or smile. Post one of your favorite

April 8, 2007 Posted by | Fun | 4 Comments


face-transplant.jpgThis article was forward to me by one of my contacts that also have nf. After the read the article post your thoughts. Would this solve the problem? Would tumors grow back? What would you do ?

French Drs. Perform New Face Transplant

PARIS, Jan. 23, 2007

lantier.jpg(AP) French doctors said Tuesday that they had performed a partial face transplant on a man whose face was disfigured by a genetic disorder, giving him a new nose, mouth and chin and replacing part of his cheeks.The 15-hour operation Monday was the world’s third partial face transplant.”The patient is doing well from a surgical point of view,” said Dr. Laurent Lantieri. Still, he added, “We will have to wait many months for the results.”The 29-year-old patient suffered from a genetic condition known as neurofibromatosis, which causes tumors to grow on nerve tissue throughout the body, the doctors said. The condition is similar to the disorder that affected Joseph Merrick, who was depicted as “The Elephant Man” in the theater and on screen.The patient had undergone about 30 or 40 surgeries over 10 years to try to improve the appearance of his face, Lantieri said. The tumors on his lips had grown so large that he could no longer eat properly or speak easily, Lantieri said.”It was the only solution,” he said.Doctors said one of the patient’s main sources of suffering was the fact that he could not get a job because of his appearance.

Despite the lifelong risks that a transplant surgery poses — episodes of rejection or even death — the patient “didn’t hesitate a single second,” Lantieri said, adding that the patient was “completely serene” going into the surgery.

The man remained sedated Tuesday, and still had not seen a picture of himself. The doctor did not release any identifying information about the patient or the donor.

Lantieri carried out the operation at Henri-Mondor hospital in the Paris suburb of Creteil.

In 2005, Frenchwoman Isabelle Dinoire received the world’s first partial face transplant after her dog mauled her. Since that surgery, a Chinese farmer also received a partial face transplant after he was disfigured in a bear attack.

The latest procedure is different because the patient was disfigured by a genetic condition, not an accident.

Lantieri, an adviser to the French medical ethics panel, had criticized the first partial face transplant, saying Dinoire’s surgeons should first have tried reconstructive surgery.

On the anniversary of Dinoire’s procedure in November, doctors said her operation was a success and that she is gaining more sensitivity and facial mobility.

Doctors in Britain and the United States are also working toward similar procedures.

In October, an ethics panel approved plans by surgeons at the Royal Free Hospital in London to carry out what could be the world’s first full-face transplant, though it said no patients had been selected yet. The Cleveland Clinic in Ohio is also working on plans for full-face transplants.

April 5, 2007 Posted by | neurofibromatosis, News, Uncategorized | Comments Off on FACE TRANSPLANT


I thought this would be a good place to start. Most of you know about me, by your visit to my site. Let’s make this a meeting place for us that have neurofibromatosis, and other disorders. Anyone that would like to express there feelings and experience can post here. We can be a support to each other. Let’s start blogging. You know about me. What would you like us to know about you. You can post here. I also have my personal email for contact aswell.

April 4, 2007 Posted by | Friends, neurofibromatosis | 2 Comments


blue.jpegAustralia is one place I have always wanted to visit. There are so many beautifully places there, it would be hard to pick just one.

If I had to choose, I would say Blue Mountains, from there it would be Sydney. See told you it hard to say just one. The pictures I saw are breath taking. I would like to know what you think? It would really be nice to hear from someone in Australia.

April 2, 2007 Posted by | Uncategorized | 4 Comments


According to American Sleep Apnea Association the following is foundapnea2.jpg.
The Greek word “apnea” literally means “without breath.” There are three types of apnea:

1. obstructive 2. central,and 3. mixed. Of the three, obstructive is the most common.

Despite the difference in the root cause of each type, in all three, people with untreated sleep apnea stop breathing repeatedly during their sleep, sometimes hundreds of times during the night and often for a minute or longer.

ost.jpegObstructive sleep apnea (OSA) is caused by a blockage of the airway, usually when the soft tissue in the rear of the throat collapses and closes during sleep. In central sleep apnea, the airway is not blocked but the brain fails to signal the muscles to breathe.

Mixed apnea, as the name implies, is a combination of the two. With each apnea event, the brain briefly arouses people with sleep apnea in order for them to resume breathing, but consequently sleep is extremely fragmented and of poor quality.

snore.jpgSleep apnea is very common, as common as adult diabetes, and affects more than twelve million Americans, according to the National Institutes of Health. Risk factors include being male, overweight, and over the age of forty, but sleep apnea can strike anyone at any age, even children.

Yet still because of the lack of awareness by the public and healthcare professionals, the vast majority remain undiagnosed and therefore untreated, despite the fact that this serious disorder can have significant consequences.Untreated, sleep apnea can cause high blood pressure and other cardiovascular disease, memory problems, weight gain, impotency, and headaches.

Moreover, untreated sleep apnea may be responsible for job impairment and motor vehicle crashes. Fortunately, sleep apnea can be diagnosed and treated. Several treatment options exist, and research into additional options continues.

This a question, I would like to know, have there been any studies on nf patients that believe they may have sleep apnea? I ask this, because it’s a problem I have been dealing with. I wonder if Neurofibromatosis and sleep apnea be related to the other? Is there anyone else that with nf, believe they may have sleep apena?

April 1, 2007 Posted by | Uncategorized | 9 Comments