A NOTE FROM KEVIN NEALON.

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.

Let’s all be thankful!

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

Thank You, Connie And Jaen Lawrence!

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.

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

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

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!

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

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?

HATS OFF TO THE COMCAST REPS IN HOUSTON / JERRY’S BACK FROM IRAQ!

 

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

 

Meet Reggie Bibbs – I have neurofibromatosis

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

New Facebook Group – “Friends of Neurofibromatosis”

To All:

I have created a group on Facebook called “Friends of Neurofibromatosis.”

To those of you unfamiliar with Facebook, it is a FREE website that allows you to do a lot of things like post photos, videos, and friend links, much like MySpace, but with one very important difference. It allows members to form groups of like-minded people who share special interests and allow them to easily interact with each other.

I can’t think of a more perfect tool to use in building a community of people who are challenged by neurofibromatosis in one way or another than this. Whether you have NF, have a friend or family member with NF, or are just interested in helping people with NF, this is the website for you.

By becoming a member of this group, you will be able to connect with other people who share the same frustrations, burdens and pain of NF. You can pass along information that you think might be helpful to others. We can send time-sensitive newsletters to ALL group members with a click of a button when an important event or news item occurs.

Facebook will never replace this blog but it will provide us the means to meet new people, build awareness, share information, and, most importantly, help us build a community that helps provide comfort, education, distractions and support to all affected by NF.

Please check out the group at this link and if you can see the endless possibilities that this site provides, please join!

I thank you! —Lou http://www.facebook.com/group.php?gid=21960217912

Reggie’s Meeting at Lou’s Office

Today, Lou and I had a meeting about the blog, website and future plans. Everything went Terrific!

While at STANANDLOU, we took a few pictures after the meeting. I’m looking forward to the exciting things we have planned for the website. Of course, I came up with most of the ideas so don’t give Lou all the credit.

Anyway, I will be heavily involved helping the Texas Neurofibromatosis Foundation with their search for a cure for NF. I want to help with their events for 2008. I know I will go to the NF camp this summer.

If you are a regular on my blog, it might be a good idea to start spreading the word about the blog to your friends that have NF. The blog is a good place to find out about upcoming events and also just to share information and have fun, too!

I think people have fun here even if they don’t have NF. Just ask Shelley, Arthur and Lou. Never mind, don’t ask Lou!!!

Reggie Bibbs JUST ASK! ONLINE STORE NOW OPEN

I’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.

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!

Texas Renaissance Festival, 11/17/07

Lou, Elena and I had a blast at the Texas Renaissance Festival today! What a perfect day: nice and cool, great food, people and entertainment! If you haven’t been yet, you must go. If I could have a great time, so can you! Here is a link to the photos we took…well, at least the ones we could publish! PHOTOS

Watch ABC/Channel 13 tonight for my interview with Christi Myers!!!!

That’s right! Tonight on channel 13 my interview with Christi Myers will air. It should be around 6:30pm and 6:45. The interview want very well. We filmed in my bed room, as I was working on my website. I’m looking forward to your comments on the story.

CLICK HERE TO SEE MORE PHOTOS!

CLICK HERE FOR TV INTERVIEW

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!

NF CAMP THIS WEEKEND

Hey guys and gals Just want to let you know where I will be this weekend. Burton Texas for the annual NF Camp. It’s been years since my last NF camp, and I’m happy to have this chance to go this year. I will get to see a lot of my friends from the other times I have gone. If you are not able to attend, don’t worry I plan to take lots of photos that you can see here and on my photo page. And all of you that can’t make it this year I hope you will plan to come next year. So lets talk camp today.

A new friend has joined us, Patricia Stokley

Hi 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)

MEET A REAL HERO BRIAN CARR

Today I had a terrific afternoon. The Texas NF Foundation had its first picnic in Houston Herman Park. I’m so happy that my family and I had a great day in the park. I met a lot of new friends that have both NF1 AND NF2. I was blessed by each and everyone. Before today, I was not 100% sure if I would go to camp or not. Well I’m 100% sure now. I will be there. I think the new friends I met today was a big part of why I’m going. I found myself talking to other people about going. I think a lot of them learned of the camp today. All seem to want to attend. I would like to see a huge turn out. I will be taking lots of pictures. Be ready to smile.

By now we have seen my hero. Brian Carr. I met Brian and his Mom Virginia. Brian has NF2 and he agreed to have a picture with me. I so happy he did. Brian will visit my blog from time to time. Let’s show him how we do it here. SUPPORT ! I pray for the best for Brian and all of the other wonderful people I met today. Thank you Brian, and I hope to see you at camp. Think about it. You can find a few more photos from the picnic on my photo page. Cindy will have them as well. Thank you Cindy Susan, and the Texas NF Foundation for a terrific picnic.

NEW FRIEND MESSAGE FROM A MOTHER WITH HOPE

Hello 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.

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?

ANOTHER ROLLER DERBY NIGHT IN HOUSTON

My friends Lou and Rie and I enjoyed a evening of fun, skating and great entertainment Sunday.

Yes, it was the third Sunday of the month…Roller Derby Night!!!

I just have the best time ever every time I go. All of the teams are TERRIFIC and treat their fans really nice. They are always willing to take a photo and sign autographs for fans. And put up with Lou!!!

I hope more will learn about the Roller Derby ladies here. Maybe I will see some of you next month. I do intend to be at the next one. Be sure to look for me. ‘ll be the one with the big smile!

Mistilla the Killa, DeMENticia, Carmen Geddit, Crasher and Fro-Rocious rule!

Breakfast with Greg Gorman

Yesterday I received a call from my friend Greg Gorman, the world-famous photographer from Los Angeles.Wow!

Greg asked if we could meet for breakfast this morning. I can’t believe someone as famous as Greg Gorman would take time from traveling to have breakfast with me.

It’s been 10 years at least since we’ve had a chance to visit in person.

Greg, Carl and I had a terrific visit as well as the most important meal of the day. Breakfast. Thank you Greg and Carl for your time today

THE T-SHIRTS ARE HERE!!! THE T-SHIRTS ARE HERE!!!

Here are two of my nieces, who you have seen before. They are helping me get the word out that our new shipment of JUST ASK t-shirts just arrived! FINALLY!!! I know many of you have been waiting patiently since we ran out last month and I really, really appreciate it.

To order, click here!

ALL sizes are now available to anyone that would like to order. S, M, L, XL, 2XL AND 3XL!!! They make terrific birthday, Christmas and wedding presents! And nothing says “I Love You!” more than a “Just Ask!” t-shirt on Valentine’s Day!!!

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

Hello 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.

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.

SHORTS IN HOUSTON

I have a new tripod, so I took this photo of myself working at my computer. I know it looks like I posing for the photo. Well, you’re right. I’m wearing shorts around the house. I wish I had the guts to go someplace wearing shorts.

People always ask for my advice and how do I handle things. Now I ask you, do you have advice me for?

I’m not that strong, but any encouragement or advice you can give me, I’m all ears or leg. : > ) You know living in Houston, you have to wear shorts in order to keep cool.

4TH OF JULY CELEBRATION

Hello 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.

BEDROOM REPAIRS

I 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.

Believe 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.

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 .

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.

Meet Reggie Bibbs & neurofibromatosis (Video)

Reggie Bibbs discusses his life growing up with neurofibromatosis and how people react differently to him since launching his “Just Ask” campaign.

CLICK HERE

SHARE YOUR NF EVENT PHOTOS

I set up an Flickr account for Texas NF photos and I would like people to go to Flickr and upload your favorite photos. Or if you don’t know how, you can send them to me. I will upload them for you. Here is the link. http://www.flickr.com/groups/344939@N24/

Maybe you have pictures from camp you want to share. Or maybe a support group. I hope to see your photos soon.

ART CAR PARADE

Lou 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!