neurofibromatosis cafe

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

My NF T-SHIRT from France!

3177673282_0f49b214a6_bMy friend Francis was nice enough to send me a t-shirt all the way from France. I’m  proudly wearing the NF FRANCE t-shirt. Francis also is a bloger here and he has is own blog page as well. He wrote about me in two of his blogs. We recently spoke on the phone and he, like all of us here, is spreading the word about nf and hope there will be a cure some day. There is always hope. The link to the site on the shirt is anrfrance.org If you would you can visit Francis blog. droitaladifference.blogspot.com/

You can use google translate if you don’t know French. It works really well. Some day I will visit France wearing my nf France t-shirt.

See all the photos HERE!

January 7, 2009 Posted by | Awareness, Friend, Just Ask!, neurofibromatosis, T-shirts | 15 Comments

A NOTE FROM KEVIN NEALON.

3090342427_26cb9dd5b3_b3090342561_eb020396fa_bThis weekend I got the shock and surprise of my life! I was going through my emails looking for a phone number when I came across an unopened email dated November 14! It was from my new friend Kevin Nealon, from Saturday Night Live, who I had just met the night before.

I have no idea how I missed this very important email but I guess it was because I was traveling and wasn’t able to check email till I got back home. Anyway, here is the very nice email that Kevin wrote plus the photos he sent.

Hey Reggie,
So great meeting you last night, and your friends! I’m so
flattered that you guys came to my show. Oh, loved your website, too!!
Susan and I loved checking out each category. Great videos and pics,
great coverage on the news stations as well. We’re so impressed with
your courage and your raising awareness of NF. What a difference you
are making! Please keep us updated on the foundation.

Attached are a few pictures of me wearing your shirt. Btw, it
fits me like a glove. I have a new cause now. 🙂

Best wishes,
Kevin and Susan

Most of you have seen the photos from my trip to Manhattan Beach California, when I went to visit my friend, Scott. Well, on the visit, Scott suggested we go see Kevin Nealon at the Comedy club. That is where it all happened. After the show Kevin came over to meet me. It was there when I shared with Kevin and his Wife Susan about NF. What a nice couple they both are. So kind and understanding to NF, and the JUST ASK campaign. I’m proud that Kevin is wearing one of my JUST ASK! T-shirts. You never know where you may see one next. Thank you Kevin and Susan for your support. Hope to see you soon.

December 8, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Awareness, Benefit, Celebrity, Favorite Places, Friend, Friends, Friends of NF, Fun, Fundraising, Help, Just Ask!, News, nf, NF1, Photos, T-shirt, Texas NF Foundation | 33 Comments

Let’s Go To The Texas Renaissance Festival!!!

The Texas Renaissance Festival this weekend sounds like a terrific idea. I plan to be there Saturday to join in the fun. This will make my second year to attend.  Last year was a blast and I’m sure this weekend will be just as fun as last year. See the link for more on the Festival.  If you enjoy things like games food music then you will enjoy the Renaissance Festival.  I will be there hope to see you.   See the link for more information.

October 30, 2008 Posted by | Friend, Friends, neurofibromatosis, NF1, TEXAS RENAISSANCE FESTIVAL | , | 13 Comments

TEXAS NEUROFIBROMATOSIS CAMP FOR ALL WEEKEND FUN!

Today is September 7th.  Just returned for Camp For All.  If you have never atten The Texas Neurofibromatosis Foundation’s, Camp For All. Trust me. You must attend next year.

I’m feeling really emotional.  Joy and sadness.  I met so many new friends as well reunited with friends from prevouis years.  Some of my friends don’t have NF but attended the camp to support me and have fun.

There are lots of Activities to enjoy.  What I enjoy mose of all.  When a parent or someone that met me on myspace, facebook or the local news, they come to talk to me and just want to talk.  It’s a feeling that I could never express in words.  It’s the greatest support one can ASK for.  For me and the person I have the pleasure of talking to.  It’s like getting a new family member.  And it hurts when it’s time to go home.

The joy is that you can look forward to the next year.   And it gets beter than that. You can keep in contact via email until the next camp. I want to say thank you to all of you for a greak weekend. If you see your photo and you want to add comment please do so. Add you name to it as well in the comment box.  We would like to know ideas you have for nexy year. what you will like to see to make it better. I will pass your ideas to The Texas NF Foundation.

PHOTOS

September 7, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Texas NF Foundation | , , , | 48 Comments

TEXAS NEUROFIBROMATOSIS FOUNDATION AND CAMP FOR ALL

I’m looking forward to another great time in Burton Texas.  Camp For All. The first day of camp is September 5-7th. Everyone who is going should have all there information submitted by now. I hope so.

Again this year The Texas Neurofibromatomatosis Foundation is having their annunial NF Family camp.  Again we are going to have a terrific time meeting our friends from last year, and I know we will make new friends this year as well. Horse back riding swimming games and more.  The best part is meeting new friends and sharing stories. It’s going to be a great one and I hope to see you there. Who knows you may see someone playing his music with his newly formed band. I’m not saying you will have to come and see.  Some you know might play the autoharp. Just maybe.

August 28, 2008 Posted by | Awareness, Friend, Friends, neurofibromatosis, NF1, Texas NF Foundation | 13 Comments

Meet “JUST ASK” Live Chat-Person, wee_lou_c from Scotland

hey fellow nf’ers its louise here aka wee_lou_c i’m 20 i’m an aquarius as my date of birth is 4th february 1988, i come from the U.K a quaint little town in the bonnie land of scotland it is called glenrothes which i’m guessing is called a state to you guys but its a county here but that is in fife so i’m a fifer. at the age of six i had a biopsy which verified i had nf but i never found this out till i had vision problems at the age of 12 so i was then officially diagnosed with nf2. iv had a little trouble within the years but nothing i couldn’t fight my way through as i believe to get on you have to forget what you have lost and remember who and what you still have. i like to chat as its great speaking about all the different cultures and food and things happening around the world plus i’ve made many new cool friends. i am a complimentary therapist so i like the calm side of life but i’ll never say no to a party. i absolutely love watching lovey dovey films aka chick flicks, i also love scottish stovies they are really braw oh i am sorry i mean good.
take care all and have some fun.

June 26, 2008 Posted by | Friend, Friends, neurofibromatosis | 22 Comments

Emily’s Name-My-Baby Contest!

y1p3lb28exaadeupbygs6ljvchkt687fu08plfbpuxe1g9ggcoz98ivujlltbg8-w38nmhdxtpmsto.jpegI have a baby due in March. This is a contest to help my husband and I select a name, and also to have some fun. We don’t guarantee we will use a winning name selected for the contest, but it’s a real possibility. Submit your entry via this blog per the instructions below. Enter as often as you like, as many complete submissions per blog entry as you wish.
– Emily
Continue reading

January 29, 2008 Posted by | Awareness, Emily's Name-My-Baby Contest!, Friend, Friends with NF, neurofibromatosis, T-shirt | 155 Comments

Dr. Bart Moore say’s “JUST ASK!” with his new mug and state-of-the-art, homeopathic “JUST ASK!” forehead patch

bartaski.jpgGuess who visited my on line store recently?

Yep, my good friend and also doctor, Dr. Bart Moore of MD ANDERSON CANCER CENTER. He is proudly displaying the items that he purchased at the “Just Ask!” online store a short time ago. Not only is he a supporter of NF and “Race Across America for NF”, he’s also a very cool guy to have on your side.

Could you get your doctor to take a photo like this? I don’t think so! What a great sense of humor. Thanks for sharing your photo Dr. Moore! You’re the best!!!

Check out what people had to say about Bart at my Flickr account.

January 22, 2008 Posted by | Awareness, CTF.ORG, Friend, Friends of NF, Fundraising, Just Ask!, M.D. Anderson, Medical Resources, neurofibromatosis, Texas NF Foundation | , , , , , | 281 Comments

Reggie Bibbs JUST ASK! ONLINE STORE NOW OPEN

cup8x10.jpgI’m proud to present to you the Reggie Bibbs online Just Ask! Store. We are now open. There are a wide range of new products available.

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We can increase awareness of Neurofibromatosis on a wider range, at the same time raise money for neurofibromatosis.

All proceeds will go toward research and awareness. I know you will find a product that will meet your fashion needs. My original shirts can be ordered from my site. The new link will take you to the store.

Happy Holidays and Happy Shopping!

December 22, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Adgiant, Appearances, Awareness, Friend, Friends of NF, Fun, Fundraising, Just Ask!, neurofibromatosis, News, NF1, NF2, Reggie's Search Machine, T-shirt, Texas NF Foundation | , , , , | 141 Comments

“Just Ask!” t-shirts at Harold’s in the Heights!

harolds.jpg My friends, Michael & Harold Wiesenthal, of Harold’s men’s store in the Heights, are helping me spread awareness of neurofibromatosis and my website by giving a free “Just Ask!” t-shirt to their customers.

Hopefully, people who receive my shirt will go to my website, www.reggiebibbs.com, to find out more about neurofibromatosis and what they can do to help.

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I’ve known Harold and Michael for many years now and I can’t think of two nicer people in the world! They help me by altering my pants for free so that I can fit my leg through the opening. One year, they even staged a fashion show with Carolyn Farb in their store with proceeds benefiting research to help find the cure for NF.

Thank you, Harold and Michael, for helping me get the word out about neurofibromatosis. You both are very, very good friends!

December 10, 2007 Posted by | Awareness, Friend, Friends of NF, neurofibromatosis | , , , , , , | 135 Comments

PLEASE HELP ME & THE TEXAS NF FOUNDATION SET-UP HOUSTON NF SUPPORT GROUPS AND EVENTS

logo.jpgDear friends, while I was up in Dallas last week helping with the Denise Terrill Golf Classic benefitting NF, I got to talking with a few members of the Texas NF Foundation and we think it’s time that Houston had their own NF support group again.

Back in the 90’s, the Texas NF Foundation actually had an office here in Houston to help those in the area afficted by NF to get the medical help they needed. And just as important. support in their daily lives. Continue reading

October 28, 2007 Posted by | Benefit, Favorite Places, Friend, Friends, Friends of NF | , , , , | 58 Comments

SUGAR RAY LEONARD

rayleonard4.jpgrayleonard2.jpgGuess who is wearing one of my JUST ASK! t-shirts?

You probably already know from the photo you see here. Yes my friend Sugar Ray Leonard. I was so happy when Ray ordered one of my t-shirts. He told me he would be proud to send me a picture of himself wearing my shirt. He kept his word and I have the pictures to prove it. I have known Ray for a long time and he is always supporting my in everything I have done. Imagine someone as famous as him supporting my efforts in NF awareness. He’ll always be the “Champ” in my eyes!

October 19, 2007 Posted by | A MESSAGE FROM REGGIE, Awareness, Celebrity, Friend, neurofibromatosis, Reggie's Search Machine, T-shirt | , , , , , , , | 31 Comments

A MESSAGE FROM A FRIEND WHO IS NOW IN IRAQ

477733757_e92802af071.jpgHey Reggie,You most definitely can share this with Lou. If you put it up as part of your blog I’ll be able to answer directly on that.

We do hear gunfire everyday and bombs explosions 3 – 4 times a week. The gunfire I think is from the practice range, but the major explosions I have yet to figure out if they are incoming or outgoing, probably both.

When I originally applied for this job a lot of people ask me why I would want to work in war zones…….I never really told them why but I will tell you why. Continue reading

September 27, 2007 Posted by | Awareness, Friend, Friends of NF, neurofibromatosis | , , , , | 107 Comments

A new friend has joined us, Patricia Stokley

l_934dd3b2740501532f7c7e493f37cadd.jpgHi Reggie

I am so glad I found your web site, I have looked at several different NF websites and all I ever saw was support groups for children, not that I don’t think kids don’t need support, they do, I know how mean kids are so very mean. but adults need support also,

I do feel that I am luckier then a lot of other people with NF, most of my complications are hidden except for my speech I had to take years of speech in school, I could not even call my sister by her name, Linda, it was too hard, my tongue is deform in the back, I have a hard time hearing, I can hear noise, but so many times I just cant understand what is being said, and i know people get aggravated with me when i ask them to repeat themselves more than once, but I just cant understand, I have seizures, and there are few other problems I have I only have a few of the tumors (my mother always called them bumps) and a lot of the cafe spots (my mother called them birthmarks) Continue reading

September 2, 2007 Posted by | A MESSAGE FROM REGGIE, Friend, neurofibromatosis | , , , , | 85 Comments

SUPPORTING MY FRIEND JOHN IN ALASKA

anchorageskyline.jpgSome time ago I received a heart warming message from John in Alaska. He too is a great parent that has a child with neurofibromatosis. I enjoyed reading his message and I spoke with him about sharing his message here, like I have done with some of your messages. I think its a great place to show John that he is not alone and we support him. Read his message and lets show some love to John. He will be happy to see the support he gets here.

(FROM JOHN) Continue reading

August 15, 2007 Posted by | Awareness, Friend, Friends, Just Ask!, neurofibromatosis | , , | 4 Comments

What I did on my summer vacation!

1100001133_07577994c3_b.jpgI learned how to use a digital camera, sort of.

Stay tuned for photos to be posted at your favorite Flickr site, or Reggie’s!

I missed you guys…in a perverse sort of way!

– Adgiant

http://www.flickr.com/photos/adgiant/

August 13, 2007 Posted by | Adgiant, Friend, Fun, neurofibromatosis, Photos | 23 Comments

Houston Roller Derby Stars at Tomball Event, Aug 3!

tomball.gifOne of the best sporting events in Houston, in my opinion, is the Houston Roller Derby at Verizon Theater. I have been at least three times, and all I have to say you must go if you haven’t been. If you think it’s all fake and everything is rehearsed, think again. These ladies are tough!!! And some of them are real mothers! (No joke intended.)

I have enjoyed every game. They really treat the fans like they are the stars. I’m building quite a collection of photos with a lot of the team members. I still haven’t taken photos of everyone yet. Luckily, all of the team members are very accessible before and after the matches to talk, sign autographs, take photos and hang with audience members.

Hope to see you at one of the bouts. I know I will be attending as many bouts as possible.

Their next match isn’t until the third Sunday in August at the Verizon Theater downtown but many Houston Roller Derby members will be at the 35th Annual Tomball Night
Celebration
in Tomball!

This would be a great opportunity to come meet and talk with your favorite Houston Roller Derby stars! I’m hoping to get a complete list of all planning to attend so as soon as I get that, I’ll post it here!

Here’s all the important details:

Date: Friday, August 3rd
Time: 5pm – ??
Cost: FREE- so come hang out!
Where: Bob’s Wild West
Address: 400 W. Main, Tomball
Directions: Take 249 North, turn Right on Main
Fun, Food, Music, Prizes, and Fireworks!

See ya’ll there!

July 28, 2007 Posted by | Friend, Fun, Houston Roller Derby, neurofibromatosis, News | 8 Comments

“Uncle John” Turner Dies

FOR IMMEDIATE RELEASE
Contact: Mark Murray
ph: (512) 587-6833
email: mmurray@kvue.com

“Uncle John” Turner
August 20, 1944 – July 26, 2007

Legendary Texas Blues Drummer Dies at 62

B.B King once exclaimed, “Man, I can set my watch to your time!”


Legendary Texas blues drummer “Uncle John” Turner died Thursday, July 26th, in Austin, Texas from complications related to hepatitis C. He was 62 years old.

Born in Port Arthur, Texas, Uncle John was a childhood friend and bandmate of legendary southeast Texas blues and rock guitarist, Johnny Winter. While playing drums with Winter in 1968, Turner convinced him to try a full-blown blues band format and sent for his friend Tommy Shannon to play bass. Success quickly followed, and the trio went on to record what many consider to be three of Johnny Winter’s finest albums: “The Progressive Blues Experiment,” “Johnny Winter,” and “Second Winter.” With fourth member Edgar Winter, they played Woodstock in 1969, as well as numerous other festivals and shows around the world. Continue reading

July 26, 2007 Posted by | Friend, Fundraising, Music, neurofibromatosis, News | 1 Comment

FORTH WORTH MAYOR MIKE MONCRIEF

376702630_0e7ac2eb0e_o.jpgI received a wonderful letter from my friend from years back. At the time I met Mike Moncrief, he was Senator Mike Moncrief for the State of Texas. And now he is Mayor Mike Moncrief of Fort Worth. He and his wife Rosie have been very supportive in everything I have been involved in. You will see that in the photos in my picture section on Flickr. Mike and Rosie also wear one of my JUST ASK t-shirts. I’m honored to call them my friends!

Here is the email that he sent me today:

Mike & Rosie Moncrief, Mayor and Mrs. Mayor of Fort Worth

“Hey Reggie, I just visited your website and i was most impressed. The ongoing
challenge of raising awareness of NF and search for a cure is made easier by your efforts. By the way, I wear my Tshirt every chance I get and have had numerous folk come up to me and ask about it. Keep up the great work and you are more than welcome to post this email on your blog.

Your Bud,
Mayor Mike

July 1, 2007 Posted by | Appearances, Awareness, Friend, Friends, Fun, Fundraising, Help, Just Ask!, neurofibromatosis, News, nf, NF1, Photos, T-shirt | 4 Comments

4TH OF JULY CELEBRATION

neurofibromatosisHello Friends We are coming up to another day of celebration. Wednesday July 4th Houston is having a day of fun, music and a large display of fireworks. Come join the fun! I plan to be there wearing my JUST ASK t-shirt and would be happy to meet new friends. I always get a little nervous at these large events, but I’m sure with the great people we have in our great city, I will have a TREMENDOUS time. I hope to get some pictures meeting more friends. See you there.

June 30, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Awareness, Friend, Friends, Fun, Just Ask!, neurofibromatosis, nf, NF1, Photos, Some People, T-shirt | 8 Comments

MY NEW FRIENDS IN THE UK.

i183123312_96166_4.jpgI’m so happy that I am meeting new friends, to share our stories with one another. I asked Katie’s mom Vanessa about the UK. She writes a lot of things I enjoyed reading. I wanted to share them with you. Read below. I’m looking forward to the video, which I hope to post here. Thank you Katie and Vanessa! Continue reading

June 29, 2007 Posted by | About Me, Astros Game, Awareness, Friend, Friends, Fun, Fundraising, Help, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Video | 1 Comment

Dorothy at IKEA Rocks!!!

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Byron, Lou and I went to IKEA today to do a little shopping for my bedroom. I had just finished painting my bedroom and Lou suggested it might be a good time to do a little “spring cleaning” and take a new look at my bedroom. So we went to IKEA for ideas and saw this great bed for like $200! So I bought it! Continue reading

June 24, 2007 Posted by | Awareness, Friend, Fun, neurofibromatosis | 5 Comments

Texas NF Foundation presents $90,000 check to MD Anderson

thecheck6.jpgToday I was invited to join members from the Texas NF Foundation and doctors from MD ANDERSON HOSPITAL for a special presentation.

Minerva Terrill, a board member of the Texas NF Foundation, presented a check for $90,000 to the hospital for NF research. This is something all of us who are affected with NF can be very excited about.

Great researchers and clinicians are out there looking for a cure and there are great people like Minerva and Cindy Hahn who are doing what they can to raise the funds needed to fund that research. We have a lot to look forward to. Stay tuned! I know more good news is ahead.

June 21, 2007 Posted by | Awareness, CTF.ORG, Friend, Friends, Fundraising, http://www.ctf.org, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Photos, Research, Texas NF Foundation | 5 Comments

MESSAGES THAT MEAN A LOT TO ME

Today I received a very nice email from John, in Alaska. I am thrilled that what I hope would happen with my site, is happening. Others are learning they are not alone when they see my site as well as other site that support and discuss NF issues. I’m happy that this can be a meeting place to share our stories. We all have stories and anyone with NF is what I would call a real trouper. You are strong and you can make it. Lets support one another. Please read John’s message and give him support. Thank you . Continue reading

June 19, 2007 Posted by | A MESSAGE FROM REGGIE, Appearances, Awareness, Friend, Friends, Links, Medical, neurofibromatosis, News, nf, NF1, Some People | 5 Comments

TASTE OF TEXAS FUN

p1010076.jpgPeople are beginning to JUST ASK! This is GREAT! Friday night my family and I went to one of our favorite restaurants. Taste Of Texas.

We had the best time I can remember. It was 15 of us. Sisters, nieces, nephews, brother sister in-law,and Mom. Of course ME ME ME! We all sported out JUST ASK t-shirts. We felt like stars. We got a lot of smiles and people commenting on our t-shirts. Lots of you ASKED. I thank all of you that wanted to know. It was a wonderful family night for us. Thanks to the Staff of The Taste Of Texas. You did a TREMENDOUS job as always!

June 16, 2007 Posted by | About Me, Appearances, Awareness, DESSERTS, Favorite Places, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Photos, Restaurant, T-shirt | 8 Comments

MY MESSAGE

Most of you may know a little about me. My Name is Reggie Bibbs. I have a disorder

called Neurofibromatosis, or NF for short. This disorder causes disfigurement, pain,

blindness, hearing loss, learning disabilities, and yes, even death.

Not only that but most of us who suffer with this disorder have everyday trials that may seem easy for you, but is very hard for us. For instance, how many of you give it a second thought about going out to buy supplies for your computer? You may worry about what you will wear? But that’s probably it. Continue reading

June 10, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Friend, Friends, neurofibromatosis, News, nf, NF1, Some People, Texas NF Foundation | 13 Comments

REGGIE’S HOBBIES (COOKING AND BAKING)

p1010016.jpgpatotoes BAKED BEANS Most of you who know me, know I love baking and preparing large meals for my family relatives and friends. Sunday’s are always fun.  That is the day the largest meal is prepared.  Yesterday was a nice meal, and I would like to share some photos with you.  Now this wasn’t the best meal, but we all enjoyed it and are very thankful that God provides for all of us  It you have some photos of what you enjoy cooking, grilling, or baking share your your photos and comments. And if you have tips that would be terrific.  I know I can use all the tips I can get.  Looking forward to your comments.   My favorite cake to bake is German Chocolate Cake.  And Cobbler.   Peach and Berry cobbler. You will get to see photos of that soon.  I would love to love to see your photots.

June 4, 2007 Posted by | About Me, DESSERTS, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Photos | 2 Comments

MEETING OTTMAR LIEBERT

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

Minerva and Robert Terrill’s Story (Video)

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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