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

We wanted to send
a big thankyou from the team!
Pic
attached!
This is the team
below-Tom Lindley on the left, then Tom Peppiatt who you know, Hereward
Pelling our Series Producer , Peter Crystal who you also
know,
Then below
are Caroline Meyer our coordinator and myself the Production Manager Donna!

I got the surprise of my life today. Well it shouldn’t have surprised me. Sugar Ray has always been a supporter of my work in JUST ASK.  Sugar Ray wrote me.  He said, he needs a new Just Ask t-shirt, so he can continue to wear my shirt and help spread awareness of neurofibromatosis when he travels to other countries.  This is great to have someone as famous as Sugar Ray Leonard to be involved with making a difference in the  JUST ASK! campaign.  Sugar Ray always ends his notes by calling me the Champ. Sugar Ray is the real Champ!

Thank you Sugar Ray.

Reggie,

there I was, back in my home town for the PA HOG Rally.  Nothing to do with farm animals, HOG stands for Harley Owner’s Group.  The rally was a bit of a let down, compared to some we have attended over the years, but being back home was great.

Thought you might want to see my small effort to get the word out in Western PA.

Your friend,
Ed Olsavicky

Photos

We had a great Music Nite last Thursday Nite! We decided we needed to work on our music more, especially now that we have a new member to the group, writer/composer/musician, Mark Sansoucy.

Mark premiered the song he wrote, “Just Ask!” last Thursday and it was killer. With just a little more practice, this could be the Neurofibromatosis National Anthem!

WATCH THE VIDEO

SEE THE PHOTOS

From: 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 (more…)

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.

I thought I would share with you about Last Saturday. I had lunch with a friend, Ed Olsavicky.  Ed is a terrific friend and a relative of Lou’s. I met Ed at Lou’s wedding many years ago.

While Ed was in town this Thanksgiving holiday, he wanted to get some good old Texas Bar-B-Q. Lou took us to Goode Company where we had a great lunch. Ed wanted to know everything about JUST ASK, and how things are going at my office. It was great talking to Ed and catching up on things since I saw him last.

I hope you enjoy the photo. He now has a Just Ask! t-shirt and will be talking aboutf Just Ask and neurofibromatosis when he gets back to Pennsylvania. Thanks ED for the lunch. See you in D.C.!

MORE PHOTOS HERE

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!

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