neurofibromatosis cafe

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

Tax Deductible Donations Now Being Accepted by the Just Ask Foundation

donate_onlineThank you for your interest in helping raise awareness for NF. With your help,  I hope to spread the word about neurofibromatosis through web, viral,  web-related resources, and personal appearances at events throughout the country

Unfortunately due to my not being rich, i.e. poor, I don’t have the financial resources to underwrite all the funding we need to meet my objectives. Thanks to Lou, I have been able to attend all of the functions you see in these photos courtesy of Lou.

I want to raise awareness of neurofibromatosis so that people affected as severely as myself can be accepted into society and lead a “normal” life. That’s why Lou and I and Matt and Geo and William and Shana go out together. When people see other people acting normal around something they don’t understand, they feel ok about it and figure there’s nothing wierd happening and they’re fine. Continue reading

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April 17, 2009 Posted by | Awareness, Fundraising, neurofibromatosis, T-shirts | , , , | 5 Comments

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

My new Friend, Ed Port, needs your help.

11212008-wdl-port-dFrom: Ed Port <gbg@ameritech.net>
Date: December 27, 2008 2:56:15 AM CST
To: reggie@reggiebibbs.com
Subject: Hello Reggie from Ed Port
Reply-To: gbg@ameritech.net

Thank you for the e-mail MIke forward it to me. How did yo hear about my story?  I fist saw you on the O about a year ago when I was flipping thou the TV chs   Mike has been trying to help me get my story out.  I ws chatting with friend today on yahoo that lives in  Romania who said he would put my website on his blog to help to get the word out and to help rasie funds.

I would like your imput on anything that would help make the website better.  I wike your store very much it would great to speak to you

http://www.edneedsamiracle.com/

Ed Port

Youngstown Ohio Continue reading

December 27, 2008 Posted by | Awareness, Benefit, Friends, Medical Resources, neurofibromatosis, NF1 | , , , , , | 67 Comments

NEW 2009 “Just Ask!” AD CAMPAIGN!

3113186003_d13b1727a7_oWe are in the last month of 2008. I’m excited for what we are planning for 2009 and the JUST ASK! campaign. We have just designed a new ad campaign with new photos and messages. The photo shoot was donated by professional photographer and friend, Greg Gorman of Los Angles California.

The new ads will be sent as a public service announcement to a variety of publications throughout the country. Also, we have entered them in the American Advertising Federation award show. The ads will compete with ads from all over the country. This is a great thing to happen, whether we win or not, because our message will be seen from people all over the world. Which means, more people will know about NF. The ads are strong and to the point.

In 2009 I look forward to a bright New Year. We will have a new look. We started with the new t-shirt design. The website will be bright as well. I hope that you will join me in making 2009 brighter. We have the same cause. Awareness of Neurofibromatosis.

CLICK TO VIEW ENTIRE CAMPAIGN

December 17, 2008 Posted by | ADDY Awards, Awareness, Blogs, Greg Gorman, Just Ask!, neurofibromatosis, PR, T-shirts | , , | 51 Comments

Carolyn Farb Endowed Lecture in Neurofibromatosis

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Reggie Bibbs, Dr. Bart Moore, Carolyn Farb, Roger Packer, M.D. & Dr. John Slopis

The Carolyn Farb Endowed Lecture in Neurofibromatosis,

“Molecularly-driven Clinical Trials for Children and Young Adults with NF1″

Speaker: Roger Packer, M.D.

Executive Director and Chariman, Dept. of Neurology, Childrens’ National Medical Center, Washington, DC

Today was the Carolyn Farb Endowed Lecture Dealing with Neurofibromatosis, Roger Packer M.D. Spoke on Neurofibromatosis type1 and other topics, what could be good news for those of us that are affected by Neurofibromatosis. Lou videod if so we hope to have the video on the site soon.

You can see what Doctor Packer spoke about. I was there and I met the doctor along with Carolyn Farb, who made it possible for the NF clinics at MD Anderson. I know I felt great after hearing the lecture. Maybe you will as well. When we load the video watch and comment here. It may take time to get the video on, but I know we will have it for you. Thanks

Reggie3111711727_9701e563b1_o23111711737_09723f99eb_o3111711765_fefc0debbe_o

December 15, 2008 Posted by | Awareness, M.D. Anderson, Medical, Medical Resources, News, NF1, Research | 17 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

The Many Faces of The Texas Renaissance Festival, 11/28/08.

To the many new friends that I met at the Texas Renaissance Festival on Friday I’d just like to say, thank you for making it one of the most fun days in my life.

There are so many new people that I’ve met that I don’t remember your names but you can definitely see your photo below. Special thanks to Taarna the Ice Queen Faerie for the beautiful handmade pin that I’ll treasure forever, Queen Bonnie and her Realm for making me a Knight (Don’t worry, I will smash the wicked peeps at every opportunity!).

Thank you Arsene Dupin – Juggler, Magician, Comedian, Mime Extraordinaire, Louis and Matt – The Fabulous Other Brothers, Blair the Beer Mistress, The Kissing Lady that was so sweet, the guy from the Houston Roller Derby with the beard and kilt, my special friends from Goodwill, the English couple in black leather that I had my picture taken with last year and this year, and finally to all the hundreds and hundreds of people at the Texas Renaissance Festival who make me feel like a King.

Thank you all and I’ll see you next year! MORE PHOTOS HERE!

3067446934_35a82fd4a2_b2The Ice Queen3066580615_e7180c62e1_b3067420564_33faccd27c_b3066567413_4ffa9eb491_b3066607229_4a90bc4e15_b3067415412_2492a88ba1_b3067452262_553fd984b0_b3067436312_57cefcbbd3_b23066600369_5d2e60aee6_b3066582639_2f5a6abf2c_b3067436954_f9b0e81f26_b3066589499_2760afb1bb_b

3066605237_0e8585f649_b3066602933_b17b85b5cb_b213067410672_087616c909_b3066581627_b9f436bea1_b13066597273_0b2e114928_b13067412922_2e0eb66486_b

November 29, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, TEXAS RENAISSANCE FESTIVAL | , , , , , , , , , , | 26 Comments

Let’s all be thankful!

thanksgiving_1To all my friends:

I have so many things to be thankful for.

This blog is my favorite because I get to thank all of you for your support. I wrote this down and wanted to say it at our Board Meeting for JUST ASK! I didn’t get to; I’m saying everything now.

After my website went live, everything has changed for me in great ways. Lou doesn’t want to take credit for what has happened here. If it wasn’t for Lou, there would be no Website and Blog, Live Stock Show and Rodeo, Baseball Games at Minute Maid Park, Football at Reliant Stadium, meeting The Neville Brothers, Mayor Bill White, George Clinton, Kevin Nealon, the Houston International Festival, the Texas Renaissance Festival, The Houston Roller Derby Bouts and the NF Fund Raiser. And I wouldn’t have met the hundreds of wonderful people along the way.

I’m thankful for my friend William Hughes for helping with the website and all things having to do with my computer. Matt Jones for all of his help with the Just Ask Foundation. Michelle Reed for helping with her generous donation to set up the Just Ask Foundation. And of course William, Matt and John Person for helping me “refine” my musical talent at our “Jam Nights” at Lou’s.

Thanks to all of my friends who helped with Doodle Day by donating doodles. Matt Loftiss, The Art Guys, Aaron Long, Andy Dearwater, Kim White, Kate Wiggins, Matt Walsh, Jordon Walker, Elena Congelio, Rhea Diaz, Former Senator and now Fort Worth Mayor, Mike Moncrief, and Sugar Ray Leonard.

Also, thank you to my friends and famous photographers Arthur Meyersen and Greg Gorman. Greg was nice enough to photograph we when I was in Los Angeles a few weeks ago visiting my friend Scott Dicksonand his family. The Dickson family treated me really well. Thank you Arthur Meyersen for helping my family after Hurricane Ike.

I will always be forever grateful and appreciative of the warmth and friendship extended to me from all my friends  at the Houston Roller Derby: Dementia, Mistilla the Killa, Jeckill & Heidi, Carmen Geddit, Fro-ro-cious and the one and only David Beebe, The Colonel!You guys rock!

How could I forget Christi Myersfrom ABC KTRK and Damali Keith from FOX 26 for their wonderful news stories. Laurie Seltzerfrom MNI Networks for the full page ads in Time, Newsweek and US News & World Report. Henry De La Garza and Jorge Moya for helping get the word out about “Just Ask!”

One of the best things to ever happen to me happened this year when my friends, Connie and Jaen Lawrence, found the perfect dog and companion for me. “Shiner”is without a doubt the best dog in the world!!! Connie and Jaen also provided me with a new mahogany desk, computers, printers and office supplies so I could move into STANANDLOU and start the “Just Ask! Foundation. I am so blessed to know these two wonderful people!

I think it would be nice if we took a minute here on this blog and said thanks for all the wonderful people and events that we have experienced this past year.

I know we all have something we are thankful for.

I feel that we have lots of promising things ahead for all who suffer with NF. Let’s give thanks to the doctors, nurses and researchers for all they do for NF research and treatment. Especially you, Dr. RiccardiDr. Bart Moore and you, Dr. John Slopis!

Last, but not least, I am thankful for all the wonderful, caring people that I have met on this blog: Emily, Patricia, Brian, Shelley, John P, Meredyth, Everette, David Linn, Susan, Cindy, Francis from France, Fran, Laura, Connie, Sugar Ray Leonard, Scott, Colleen, Allyson, Jerry, David, Tanya, Escarlata, Ne-Ne’s mom, Bob, Rick from England, Vera, Rie, Jaen, Rick, Michael, Bea, John K and over 150,000 visitors who have come to the site.

Thanks also to PJ at PJ’s Sports Bar for  Thursdays evenings for our group on Steak Night. Always a fun time before our Jam sessions. And P J ALWAYS serves my steak first!!!

In my many thanks, I’m including my Church, Second Baptist in Houston. My Bible Study Class, CrossTraining , took on a project when they saw my family had a need and the entire class pitched in and gave our home a make over,  While the work was being done, we were put up in a hotel.  We how have a new home with wonderful landscaping. Thank you Nancy Adkins and Dotty Tompkins for heading up the project. Everyone in the class took part in making our home comfortable.

I hope you all have gotten as much from the site as I have and will continue to share your stories, your challenges and your victories here on this site. Thank you all for being such good, no, great friends!

Happy Thanksgiving to everyone! Your friend, Reggie

November 25, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Friends, Fun, neurofibromatosis | 20 Comments

Tumornators Search for Cure with Rock 4 Research Concertatosis

jeffThe Tumornators and Jeff Francoeur of the Atlanta Braves present the 2nd Annual Rock4Research benefit concert on Nov. 28 at Wild Bill’s. The concert features Matt Moore opening for headliner Rhett Akins.81ba489f-2ae5-4d2f-ba93-c855cbc2b7d4

Akins is known for country hits including “What They’re Talking About,” “That Ain’t My Truck” and the No. 1 hit “Don’t Get Me Started.”

Francoeur, Matt Stinchcomb of the NFL, Morten Anderson and other sports stars will spend time with guests at a VIP party beforehand. VIPs will also be able to enjoy catered food sponsored by Kroger, Chick-Fil-A and Chili’s. VIPs will also have the opportunity to bid in a silent auction featuring signed sports memorabilia and other exclusive items; VIPs are guaranteed to receive signed picture of Francoeur.r4rpics

All funds raised by The Tumornators are directly donated to The Children’s Tumor Foundation.  The foundation is dedicated to raising money and awareness for the painful illnesses Neurofibromatosis and Schwannomatosis.

mattFrancoeur has supported The Tumornators since their beginnings in 2007, and has donated $500 to the Children’s Tumor Foundation™ on behalf of The Tumornators for every home run he hit in his 2007 season with the Atlanta Braves.
Rock4Research tickets will be available at the door and online, costing $20 for the VIP party and $10 general admission. The VIP party begins at 8:00 p.m., and doors open for general admission at 7:00 p.m.

The first 50 guests will receive a Rock4Research T-shirt signed by Francoeur.

For more information, please visit www.rock4research.com or www.tumornators.com .

Contact: Chad Leathers chad@tumornators.com     706.366.7321

Contact: Brittany Raines rainesbr@uga.edu     678-522-6534

November 19, 2008 Posted by | Awareness, ctf, Fundraising, neurofibromatosis | , , , , , , , , | 29 Comments

My friend Scott Dickson and me on Manhattan Beach!

3039660218_02ac401e8f_bThank you Scott for allowing me to be your guest at your home. Lisa, Maeve, and of Course my friend Clive. There is no way I can explain how happy I feel about the way things went for me. 3038818031_8d892c3a34_b

It’s good to be home, but sad to leave the company of my great new friends. Thank you all for your kindness.

November 17, 2008 Posted by | Awareness, Friends, Fun, Just Ask!, neurofibromatosis | , , , | 10 Comments

Reggie Bibbs as photographed by, the one and only, Greg Gorman

reggie_o4d8694-copyPhotographer: Greg Gorman

Reggie is currently on vacation in Los Angeles visiting with his new friend, Scott Dickson and his family. While in LA, Reggie had the opportunity of visiting with old friend, Greg Gorman. Greg is an internationally known photographer known for his stark, vivid images of the famous and not-so-famous.

Greg has been an important part of Reggie’s life since being introduced to Reggie by Houston socialite, Carolyn Farb.

Reggie has been featured in Greg’s books and showings.

November 14, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis | , , , | 4 Comments

Reggie Meets Kevin and Susan Nealon in LA!

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Reggie with Susan and Kevin Nealon and Scott Dickson in LA.

See more photos at Reggie’s Flickr account here!

November 14, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis | , , , , , | 3 Comments

The New Shirts are In!!!

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November 13, 2008 Posted by | Awareness, Fun, neurofibromatosis, T-shirts | , , | Leave a comment

2008 Texas Renaissance Festival, 11/1/08

Reggie, Lou, William and Geo went to one of my favorite places in the world, the Texas Renaissance Festival.

I met a lot of great people like Lisa, Christina, Lewis, Barbara “The Fairy Lady” and saw a lot of old friends including the “Pretzel Guy” and the belly dancers from the International Festival.

The weather was perfect, the entertainment very good, and I had the  BEST DARN steak on a stick I’ve ever had!

Now if there was some way we could go without Lou having to tag along!!!

November 2, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, TEXAS RENAISSANCE FESTIVAL | , , , | 3 Comments

New “Just Ask!” T-shirt Design

We are thinking of redesigning the shirts so they are simpler, more fun, and are equally appealing to men and women.

We have two styles we’re looking at – distressed and/or solid colors. We’re also investigating different colors for the shirts.

Which design do you like? What colors would you prefer?

Let us know below and who knows, you just might see the shirt of your dreams up here in a few days!

October 7, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, T-shirts | , , | 20 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

HOUSTON ROLLER DERBY HONORS REGGIE BIBBS THIS SUNDAY NIGHT! TICKETS ARE GOING FAST, GET YOURS TODAY!!!

Speaking of the roller derby, mark your calendar for August 10 as the Houston Roller Derby honors a certain person on this blog who will remain nameless.

Houston Roller Derby

Sunday, August 10

Doors open at 4pm

Bout starts at 5pm

Verizon Theater

Downtown – Texas at Bagby (LOTS OF STREET PARKING AND THEATER PARKING)

DON’T FORGET TO WEAR YOUR “JUST ASK!” T-SHIRT!!!

Please make plans to attend and wear your Just Ask! t-shirt. Don’t have one, no problem! We hope to be selling them before the match!Advance tickets are just $10 online, $15 at the door!

Come see all of your favorite skaters including Dementia, Mistilla the Killa, Jeckyll & Heidi, Carmen Geddit, Death by Chocolate and more!!!

SPECIAL THANKS TO ALL THE SKATERS, FANS, REFS AND FRIENDS WHO HAVE MADE GOING TO THE ROLLER DERBY EVERY BOUT A WONDERFUL EXPERIENCE! YOU HAVE NO IDEA HOW MUCH THAT IS APPRECIATED!!!

August 7, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, News | , , , , , , , , | 22 Comments

Charles, June and John Lowe raise over one million dollars for Texas NF Foundation!

Texas Neurofibromatosis Foundation Newsletter

Charles, June and John Lowe raise over one million dollars for the foundation!

Charles, June and John Lowe raise over one million dollars for the foundation! The Lowes have been with the foundation since the very beginning and have been raising funds through a weekly bingo session since 1988. Their devotion and contributions are more than appreciated, they are our inspiration and the backbone of this foundation.

Senator Harkin speaks out for NF! For the past several years, Senator John Harkin has sponsored an “NF Dear Colleague letter.” This letter was drafted to ask that all US Senators support NF research through the Department of Defense Appropriations Committee. These effort are the very reason scientific advancements have been made towards a cure for NF! Please join us by personally thanking Senator Harkin for his continued support.

CURRENT EVENTS

JULY Summer Family Picnics: Bring the family and meet others in the Houston, Dallas and San Antonio areas!.

June 26, 2008: Support Group Meeting, Dallas, TX
Sept. 5-7, 2008: NF Family Camp, Burton, TX
Sept. 23, 2008: Friends FORE Friends Golf Tournament, Richardson, TX
October 18, 2008: Spam OH! Rama, Irving, TX

2008 Symposium: Dallas, TX. More details to come. Continue reading

June 18, 2008 Posted by | Awareness, neurofibromatosis, News, Texas NF Foundation | , | 9 Comments

HOUSTON ART CAR PARADE, 5/10/2008!!!

What a great day for a parade!

My second year going to the Art Car Parade, and just like last year, I had a terrific time.

Nice cars and so many to choose from that might be the best one. One that sticks in my mind, well it’s really two. The Grapes are and the Red wagon.

I also met a lot of people that was me last year and and new people that saw me on the news last week.

All the photos are here for you to enjoy. Just go to my photo page to view. Please leave a comment!

May 11, 2008 Posted by | Awareness, Friends, Friends of NF, Fun, Houston Art Car Parade, neurofibromatosis | 82 Comments

Reggie on FOX News! Watch the video here!!!

Watch the interview that has all of Reggie’s blog talking as FOX News 26 interviews Reggie Bibbs. Damali Keith revisits Reggie to see how he has adjusted to life now that he has taken his disorder, neurofibromatosis, yo the public through his “Just Ask!” campaign.

There’s even an appearrance by Lou and some of his staff!

HERE’S THE INTERVIEW!!!

I hope this link works. if not, go to

http://www.myfoxhouston.com and search for Reggie Bibbs.

May 5, 2008 Posted by | Awareness, neurofibromatosis, News | , , , , | 286 Comments

Reggie and the Neville Brothers

How can I begin to tell you how much fun I had yesterday at the International Festival. The day stated out very well with meeting people who have seen me before. There where happy to take photos with me. I was remembered from last year. The food was terrific music was great. All types of music. I enjoyed the country music of course.

The best part of the evening was music from the Neville Brothers. Arron Neville. I actually got to meet the Neville brothers. A very big thank you to the Neville brothers for taking time to meet and take photos with me. Also thanks to my friends who joined us, Matt Jones, “The Tall One” and William Hughes, “The Smart One.” I said man I would love to meet the Neville brothers. Matt said, “I bet I could make that happen.” Well, he did and you see the photos as proof. I have to tell all of you I had the best time ever.

SEE PHOTOS OF CONCERT AND BACKSTAGE

It would be a really good thing if we could get a group together and do what I have been doing for a year. I can promise you it will change how people feel about NF, and you will feel better that you did it. Whether you have nf1 or nf2, it is a great thing to let people get to know who we are. I would really like my friend, Brian, to go with me some time. I really think people are more understanding now. It seems to me that people expect me to be there. How cool is that?!! Next stop, the “Art Car Parade!”

April 27, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, NF1 | , , , , , , , , | 106 Comments

Cathy Clark, Brandon, the Astros, McKee St Bridge and the Porch Swing Pub!!!

2371941305_07b85111b7.jpgAnother amazing day out at Minute Maid Park! Lou and I went to the Astros game today. We had a great time. The game was great and the Astros won! It was really nice to see so many nice people. Like Brandon, who saw me on TV2371932691_f9d3cf8d99.jpg and came up to introduce himself. Thank you for doing that!

I saw Cathy Clark, who was my bus driver when I was in school. Lets just say it was over 25 years ago when I used to ride the bus to school.

Cathy remembered me by name. I was so happy when she told me she use to drive me to school. Cathy works at the concession stand in Section 409 of Minute Maid and, I got to tell you, I’ve never been treated with more love and respect than from that entire food area!

2372768826_593ba917eb.jpgI think Cathy is a supervisor or some other type of important person because she was definitely in charge! What a great representative for the Houston Astros staff. Cathy, you made me feel so special and it means the world to me! Hope both you and Brandon will be a regular on my blog. Thank you both for making my day!

After the game, Lou and I went to the fabulous McKee Street Bridge and took some photos. WOW!!! 2372801080_fa310a4cba.jpgWhat a beautiful bridge and park! Lou’s friend, Kirk Farris, had single-handedly transformed this bridge and bayou area into a place that is totally cool, beautiful and peaceful! It’s just a few blocks north of Minute Maid Park on McKee Street just south of I-10.

2372900182_24194a87771.jpgOf course, taking all those photos at Minute Maid and McKee Street made us pretty hungry and thirsty so we went to the new Porch Swing Pub at Washington and Waugh in The Heights for crawfish!!! Man, oh, man, were they good! Lou had beer. I had Coke.

It was a beautiful day!

March 29, 2008 Posted by | Awareness, Friends, Fun, houston astros, Just Ask!, McKee Street Bridge, Porch Swing Pub | , , , | 220 Comments

Celebrities, artists, designers and friends in middle of doodling frenzy for neurofibromatosis!!!

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g-reggie-bibbs.jpgLou and I are in the middle of what I thought would be a very difficult task: asking celebrities, artists and friends to draw a doodle for National Doodle Day benefiting NF!

Well, I’m happy to say it was very easy thanks to some very special friends! With the help of some special people who want a cure for NF as much as I do, friends from all over the country whipped out their writing instruments and doodled for NF. Some of them you may know like Sugar Ray Leonard. (SEE DOODLE ABOVE LEFT)

Somee-lou-congelio-_1.jpg are friends of my friend, Lou. A big thank you to Lou and all of you who played anf.jpg big part in this effort to Knock Out NF Once and for all. Take time to see all the doodles on my photo page and go the National NF Doodle Day website!

All doodles will be posted shortly onto ebay where you will be able to bid on your favorite NF doodle!!!

Bid high, soon and often and do your part to help raise money for NF.

Doodlers include Sugar Ray Leonard; designer Andy Dearwater; artist/gallery owner Dan Allison, stamp art artist Kim White; printmaking professor Peter Massing, illustrator Matt Loftiss; America’s Greatest Artists, The Art Guys; writers Lou Congelio and Matt Walsh; Lou’s daughter, Elena Congelio; yours truly, Reggie Bibbs; STANANDLOU’s Kate Wiggins and Rhea Diaz; and my nephew, Jordan Walker.

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Continue reading

March 17, 2008 Posted by | Awareness, Friends, Fun, neurofibromatosis, nf | , , , , , , , | 152 Comments

Baylor College of Medicine monthly genetic series to focus on neurofibromatosis at Health Museum of Houston

logo.gifHOUSTON — (March 4, 2008) — A discussion on neurofibromatosis, a genetic disorder that causes tumors to grow on nerve tissue, producing skin and bone abnormalities, will be presented in a public forum March 25 at The Health Museum of Houston.Neurofibromatosis is one of the most common genetic disorders, occurring in approximately one in 3,000 births.

The forum will feature genetic expert Dr. Maria Blazo, assistant professor of family and community medicine and molecular and human genetics at Baylor College of Medicine in Houston. The parents of a child with neurofibromatosis are also scheduled to speak.

Organized by BCM and Texas Children’s Hospital, the event is part of a monthly “Evening with Genetics” lecture series organized by BCM’s Department of Molecular and Human Genetics. The series offers current information regarding care, education and research about genetic disorders.

The program is free and open to the public. It will be held at 7 p.m. at The Health Museum of Houston, 1515 Hermann Drive. For more information or to register, contact Susan Fernbach at 832-822-4182 or fernbach@bcm.edu

March 11, 2008 Posted by | Awareness, Medical, Medical Resources, neurofibromatosis, Research | 49 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

What a great day at the Houston Livestock Show and Rodeo Barbeque Cook-Off!

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OMG That was a blast last night. I Love CLEAR CHANNEL. The Best Team, and treated me very well. Thank you Rusty and the rest if you. I will never forget you. Cool seeing you There Dr. Marshall It’s too late to write a post but you can check out the photos from today at Flickr!

March 2, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Community, Friends, neurofibromatosis, RODEO | , , , , | 218 Comments

May is National Neurofibromatosis Awareness Month

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March 1, 2008 Posted by | Awareness, CTF.ORG, Friends with NF, http://www.ctf.org, Laurie Selzer-MNI, neurofibromatosis | 1 Comment

35th Annual 2008 World Championship Bar-B-Que Cookoff

wcbbqc_wide.jpgWell, tomorrow, Feb. 28, 2008, kicks off the 35th Annual Houston Livestock Show & Rodeo with the World’s Championship Bar-B-Que Contest and I’m going to be there enjoying my fair share!

Yes, I plan to be there eating all the que I can stand. I hope to get lots of photos to share on my blog and flickr page. It’s going to be a fun night.

Anyone else going to the cook off or Rodeo? Continue reading

February 27, 2008 Posted by | A MESSAGE FROM REGGIE, Awareness, Friends with NF, Just Ask!, Music, neurofibromatosis, nf, NF1, NF2, RODEO | , , , , , , | 117 Comments