Neurofibromatosis Cafe A place to talk, have fun and share.

OCT 16, 2009

HEY REGGIE HOW ARE THINGS GOING? I’M IN LONDON HEADING BACK HOME AND I FORGOT TO TELL YOU THAT IT IS MY HONOR TO WEAR MY DEAR FRIEND’S T SHIRT! I LOVE YA MAN BUT YOU NEED TO SEND ME ANOTHER T SHIRT TO SPREAD THE WORD ABOUT YOUR CAUSE CHAMP! ALL THE BEST! SUGAR RAY LEONARD

Guess 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!

This 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.

To 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. Riccardi,  Dr. 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

Some of you may have noticed my new photos that I posted today.  Thanks to my friends Connie and Jaen Lawrence, I have a huge new desk, office supplies, printers, faxes and computers. This is just prefect for all of my office needs.  My computer is really fast, and It is a Mac.  I can print, fax, and mail in high volume now of JUST ASK! products you all will order in the up coming Holiday season. : > )  Plenty of time to order now. Come on keep me busy. I will post photos of how busy you keep me at my office.

See how much desk space I have.  Also I want to thank Lou & Michelle for the office space at StanandLou.

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

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!

Well, 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? (more…)

On Valentine’s Day, I went to Comcast. I had a problem with my cable box and I took it back to Comcast. A customer service worker waited on me. Denise was very nice and helped me with my problem. It was then that she told me how happy she was to see me. And that she had seen me on TV. All of the customer service people were just as nice as Denise. I had to go back today so I asked if I could take their photo to put on the blog as a way to say thank you for being so nice. It’s nice to know that a company as big as Comcast can have employees as nice and personable as Denise and her friends. Please, if are in you the area, show some love to the great job the ladies are doing at the Bellaire location. Thank you Denise. And of course Phelisia, Patricia, and Jennifer. What a Sweet Heart of a Day for me!

WELCOME BACK, JERRY TURNER!
Hey Reggie,
I made it!!!!For everyone who has never experienced a 17 hour non-stop flight……Don’t do it!!! I thought it would be worth it not to stop in Europe on my way back, but it’s not. At some point in there you need a break. With about 4 hours to go in the flight I was in absolute misery. I’ll give you a buzz tommorrow.
Jerry T

My name is Reggie Bibbs. I am on a mission to spread the word about neurofibromatosis. I figure the more people who know about my disorder, the more they will understand me, so I made a video. Actually, I’ve made a few videos. They can be seen on my website, blog, YouTube, Veoh and Vimeo as well as photos at my Flickr, Facebook and MySpace account. If you have neurofibromatosis or if you’re wanting to help spread the word, please click on the links above, leave a comment, send an email, add the urls as links to your blogs and sites or send to your friends and fellow NF people. The more we can band together, the stronger our voice will be heard. I thank you for reading this far and I truly hope to hear from you soon!

Make it a TREMENDOUS Day! – Reggie (more…)