neurofibromatosis cafe

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

Reggie in L.A.

3387792827_c17ec5bcc8p1040770-1audrey-wells0759Just talked with Reggie and he had a phenomenal time at the book signing event last night thanks to Greg Gorman. Reggie  said he met a lot of great people and took a lot of photos. He’s  going to try to email me one or two to put on the site until he gets back. PHOTOS

In any event, if you were at the party on Wednesday, please leave a comment so we can live vicariously through Reggie’s amazing life!

Top photo: Me and photographer,

Middle: Me, Christopher Atkins (Blue Lagoon) and Scott Dickson

Lower: Me and Audrey Wells (Director: Under the Tuscan Sun).

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March 26, 2009 Posted by | Appearances, Fun, Greg Gorman, neurofibromatosis | , , , | 22 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

Rodeo Night With Martina McBride

2319566597_7713960437_o.jpgTonight was another great night at the Houston Livestock Show and Rodeo!

I started out with the live stock show and all of the other fun things. Oh, my God! Did I enjoy the FOOD. Everything was to die for. Deep fried Oreos, steak burgers, foot-long sausage sandwiches, giant cinnamon rolls with lots of icing. But don’t take my word for it, check out the photos for yourself.

Click here to see photos from today!

I went to the Rodeo to see Martina McBride. She was great and the music was terrific! She really sang her heart out. She sang all of her best songs and the crowd loved it. Of course, so did I. Martina loves Houston and she looks forward to her show here every year.

I know why she loves Houston. I feel it every time I go out. So many 2319607191_9a1724b37f_o.jpgpeople here have been so kind to me. I’m thankful to be in a great city like Houston. It made me feel so good when people I never met came up to be today and spoke kind words to me. You will see them in my photos. People like that are heroes to me!

March 9, 2008 Posted by | Appearances, Astros Game, Awareness, Friends, houston livestock show and rodeo, Just Ask!, Martina McBride, Music, neurofibromatosis, nf, NF1, NF2, Photos | , , , , , , | 127 Comments

National Doodle Day Benefiting Neurofibromatosis

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I spoke with Mari Garcia administrator of Gillian Anderson’s Official Web Site, I was asked sometime ago to help out and to contribute a doodle for NF, Inc’s Second National Doodle Day Auction. I was happy to post a blog and do what I can to be of help. Please check out the links and see your favorite Actors and actress and others who have support the fight against NF.

The auction will start on May 8 on eBay. So far there are two pages and more doodles will be added as they come in. Be sure and blog your favorite doodle.

NF, Inc. is raising money for neurofibromatosis through their annual National Doodle Day! As part of NF Awareness month, celebrity doodles will be available for auction on eBay.

These doodles have a very important aim: the funds they raise will benefit NF, Inc., an organization dedicated to providing support to individuals and families affected by neurofibromatosis (NF).doodle.jpg

Neurofibromatosis is a genetic disorder that affects one in every 2,500 births. NF is more common than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease combined. Funds raised from the Doodle Day auction will go to support education, advocacy, coalitions, and research for treatments and a cure.

To learn more about NF, please visit http://www.nfinc.org.
For more information about National Doodle Day, contact email doodleday@nfinc.org

View celebrity doodles

March 6, 2008 Posted by | Appearances, Awareness, Benefit, Celebrity, CTF.ORG, Facebook, Friends, Friends of NF, Houston Texans, national doodle day, NF1, NF2 | , , , | 62 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…JUST IN TIME FOR THE HOLIDAYS!!!

2069138483_2b7247dfc8.jpgJust a reminder to you all that are supporting the blog. Don’t forget to do your Christmas Shopping or any other holiday shopping here on my site. I have a new shipment of Just Ask t-shirts that you can order for friends and family.

Imagine how cool you and your entire family would look sitting in front of a blazing fireplace, drinking a hot, steaming cup of Starbucks coffee or Hot Chocolate, wearing a comfy, cozy Just Ask! T-Shirt

Heck, you’d look just like Sugar Ray Leonard, Greg Gorman, and Arthur Meyerson and other really cool people!!!. Oh, and of course, ME ME ME! Order your holiday Just Ask! T-shirts today and I guarantee delivery before Christmas!!! I’ll make Lou deliver them! : > )

CLICK HERE AND THEN CLICK ON STORE!!! IT’S EASY, EVEN LOU CAN DO IT!!!

November 26, 2007 Posted by | About Me, Appearances, Awareness, Just Ask!, neurofibromatosis, T-shirt | , , , | 94 Comments

NEW FRIEND MESSAGE FROM A MOTHER WITH HOPE

2007-002.jpgHello Reggie,

My name is Eleanor and my daughter was just diagnosed with NF. We noticed her beautiful little “birthmarks” when she was born and her daddy took such pride because his little girl had the same marks as he did in almost the exact places.

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She later developed freckles on her armpits and I would tease her that the freckle fairy must have slipped off her nose and landed there instead dropping her bag full of freckles.

Just this week during a check up for a mole on my son, the dermatologist noticed the cafe au lait spots and turned his attention to my daughter. You can imagine my surprise. These were after all JUST freckles. Unfortunately, the doctor did not break the news very well. I was reeling.

It has been 4 days since we got the news and I have had every emotion imaginable. Every fear…how will she be treated? will people reject her?…how will she deal with it? Is this painful? no grandchildren? Continue reading

July 30, 2007 Posted by | A MESSAGE FROM REGGIE, Appearances, Friends, Help, neurofibromatosis | 164 Comments

SHORTS IN HOUSTON PART 2 – I DID IT!!!

washcar.jpgHello my friends hello. Hum. That was in a song wasn’t it? I loved the song. Yesterday was the best day in a very long time with views on this topic. I’m very happy with the comments and support from all of you. Yes you have encouraged me to Just do it!

 

Well it’s a start and I have pictures to prove it.washcar2.jpg

You are a part of this success. Lets keep the stats up. Let me know what you think about the photos. You will see me out and about in shorts around Houston. I have to remember We have a lot of great people here in Houston, have supported me many times before.

July 10, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Awareness, Friends, Fun, neurofibromatosis | 14 Comments

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

“JUST ASK!” IS OFFICIAL

656515238_bdfd0d2b77.jpgToday I went to the Harris County Court House and filed JUST ASK! as a DBA in the STATE OF TEXAS. I am so happy! This is terrific news because it makes me feel that what I’m doing is very real: To the State of Texas and to the people who are affected by neurofibromatosis.

Not only did I file a DBA but I also opened a business checking account at Compass Bank under the name “Just Ask!” The checks will have my logo on them (drawing of my face) and “Just Ask!” Continue reading

June 28, 2007 Posted by | About Me, Appearances, Awareness, Fundraising, neurofibromatosis, nf, NF1 | 10 Comments

BEDROOM REPAIRS

p1010015.jpgp1010017.jpgI call this phase 1. There is bad news and good news. There was a small fire in my room. The good news is that my computer was not damaged. The pictures I have posted are the begianning of the repairs.

reggiebibbs-128.jpgBelieve it or not, but this is a major improvement. The green wall is gone.

The hole in the wall is repaired. I have a new desk, or work area. I have plenty of room which I did not have before. A lot has been done, and still more improvements are to come. Stay tuned for the finish project. This makes it a lot easer to do my web-site posting and flickr post.

June 27, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Appearances, Fun, Help, neurofibromatosis, News, Photos, Uncategorized | 3 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

HOPEFUL NEWS IN NF RESEARCH

NZ bee compound gives tumours the buzz-off

By Martin Johnston

Bees collect propolis to seal their hives.

Bees collect propolis to seal their hives.

A bee product from New Zealand has been shown to suppress tumours in mice, says a study presented to a scientific conference in the United States.

The researchers at a German hospital tested propolis against tumours that can occur in the nervous system and on skin in a condition called neurofibromatosis. Continue reading

June 14, 2007 Posted by | Appearances, Awareness, Medical, neurofibromatosis, News, nf, NF1, Research | 4 Comments

THANK YOU, NET 2

Last night I was invited to speak with Net 2 about my website, and neurofibromatosis. Wow! What a tremendous experience it was FOR ME. A great group that was very interested in neurofibromatosis and my campaign. I was able to share what it’s like to live with nf , and how I deal with it. I learned a lot from the group as well as I hope they learned more about nf. I feel blessed that the group received my message. Meeting Net 2 was just what I needed. Maybe if I hang around the group, I can learn more tips about making the perfect site for neurofibromatosis.

June 13, 2007 Posted by | About Me, Appearances, Awareness, Friends, Fun, neurofibromatosis, News, nf, Some People, Texas NF Foundation | 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

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

ART CAR PARADE

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!

CLICK THIS TO SEE MORE!

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

GREG GORMAN – World famous photographer, great supporter of Reggie Bibbs and one hell of a nice guy!!!

GREG GORMAN - World famous photographer, great supporter of Reggie Bibbs and one hell of a nice guy!!!Meet my friend Greg Gorman. I have been friends with Greg for 20 years. I met Greg through Carolyn Farb when Greg came to do a special exhibition in Galveston.

Greg is a world famous photographer who shoots a lot of celebrities like John Waters, Alfred Hitchcock, Jimi Hendrix, Jim Morrisson, Janis Joplin, Robert De Niro, Johhny Depp, Beyonce, Sharon Stone, David Bowie, Sophia Loren, Marlon Brando and Reggie Bibbs.

Yes. I was photographed by the famous Greg Gorman in Los Angeles! You can see me in his book “Inside Life.” Continue reading

May 1, 2007 Posted by | Appearances, Friends, neurofibromatosis, News, Photos | 9 Comments

SOMETHING TO BE HAPPY ABOUT: ENCOURAGING EMAIL

nfauk-logo.gifReggie,

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,

Kim

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