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

Our friends William Hughes and Matt Jones produced this amazing video to honor Reggie and to help him in his effort to increase awareness of neurofibromatosis. Well done, guys!

Another nite at Lou’s.  Last night steak nite,  became Music and Pizza nite.  It was quite different from our regular Thursday nite.  All of the guy’s though it would be a good idea to work on our  music and eat pizza.  Mark Sansoucy new to the Reggie Bibbs Orchestra, alone with the regulars William Hughes,Matt Jones, and Supporters Geo Austin  and Lou Congelio.  Our friend  wrote a song that  we loved. Mark was  inspired by JUST ASK, to write a song. The name of the song?   JUST ASK. You will enjoy it as much as I do, I’m sure of that. We hope to have the photos and videos  on the blog soon.  I would love to hear your thoughts on the idea. And I know I can look forward to terrific comments of the music.

Download Lyrics to “Just Ask!”

Watch the video.

Just Ask (A Song for Reggie Bibbs)
Music and Lyrics by Mark Sansoucy

Just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

I see people staring at me in restaurants
When I’m hanging out with my good friends
Yes, they see the way I look
And they get a little spooked
But that’s because they don’t know what I have

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

Pull your chair on up and come on over
I don’t bite, but sometimes my friends do.
Yes, we like to clown around
When we hit the town
But just like you they stepped on up and asked

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

Living a life like mine it isn’t easy
Sometimes I don’t want to leave my house
But I can’t live in fear
For those who hold me dear
Cause they know it’s what’s inside that really counts

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello
All you have to do is say Hello

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…)

“Reggie Bibbs was interviewed on Nov 23, 2007 for Wikinews describing what it is like living with neurofibromatosis and what he has done via his website, blog and other resources to increase awareness of NF.”

Click to watch Reggie Bibbs interview on Neurofibromatosis

I’m so happy that I am meeting new friends, to share our stories with one another. I asked Katie’s mom Vanessa about the UK. She writes a lot of things I enjoyed reading. I wanted to share them with you. Read below. I’m looking forward to the video, which I hope to post here. Thank you Katie and Vanessa! (more…)

“OCULAR FEATURES OF NF I & II”
DR. RICHARD ALAN LEWIS
Profesor, Departments of Opthalmology, Pediatrics, Medicine and Molecular & Human Genetics, Baylor College of Medicine

Dr. Lewis formerly worked with Dr. Vincent Riccardi during the early days of neurofibromatosis discovery, identification and research.

For all of you who missed the NF SYMPOSIUM presented by the Texas NF Foundation, the first presentation is now available by clicking HERE.

Dr. Sharon Plon, Clinic Chief, NF Clinic, TX Children’s Hospital and Associate Professor of Pediatrics and Molecular and Human Genetics,
Baylor College of Medicine presented “Update on Genetic Testing in NF1 and NF2.” We will be posting the other 4 presentations just as soon as we can convert them to the proper format for easy streaming.

Thank you Texas NF Foundation for allowing me to record video and take lots of photos to share on my website. Also, thank you Josh Powers of STANANDLOU Advertising for editing the videos and converting them for digital! It was a Saturday full of great fun, great friends and great information!!! Plus, I made a lot of new friends!!! If you have never gone to one before, I definitely recommend you attend the next one.

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

CLICK HERE

Meet a brave 5-year-old boy battling neurofibromatosis mistakenly thought to be “the elephant man’s disease.” But we all know John Merrick had proteus syndrome. Hunter has NF.

I just posted the FOX 26 interview about the “Just Ask!” campaign to Digg, an online video news site that is very popular in the blogger world. A video that does well here gets passed around the world very quickly and helps www.reggiebibbs.com show up higher in the search engine world. If you could take a moment to go to digg.com and watch the video and click on “Digg It” it would help this site show up higher in Google when you search for neurofibromatosis. Thank you for any help you can give!