neurofibromatosis cafe

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

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 Continue reading

February 7, 2008 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, neurofibromatosis, nf, NF1, Texas NF Foundation, Video | , , , , , , , | 242 Comments

Reggie Bibbs Wikinews Interview

17115693_160x120.jpgReggie 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

November 29, 2007 Posted by | About Me, Awareness, Blogs, Celebrity, Friends with NF, M.D. Anderson, neurofibromatosis, Research, Texas NF Foundation, Video | , , , , | 24 Comments


i183123312_96166_4.jpgI’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! Continue reading

June 29, 2007 Posted by | About Me, Astros Game, Awareness, Friend, Friends, Fun, Fundraising, Help, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Video | 1 Comment



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.

June 7, 2007 Posted by | neurofibromatosis, Texas NF Foundation, Video | 4 Comments

Texas NF Symposium Video – Dr. Sharon Plon “Genetic NF Testing Update”

drplon_7.jpgFor 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.

June 1, 2007 Posted by | neurofibromatosis, Texas NF Foundation, Video | 1 Comment

Meet Reggie Bibbs & neurofibromatosis (Video)

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


May 25, 2007 Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, neurofibromatosis, Video | , , | 1 Comment

Hunter has neurofibromatosis (Video)

Hunter Cavanaugh has neurofibromatosisMeet 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.

May 23, 2007 Posted by | neurofibromatosis, Video | , , | Leave a comment

Please go to and say you “Dig It!”

newscastI 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 show up higher in the search engine world. If you could take a moment to go to 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!

May 19, 2007 Posted by | Awareness, Fun, Links, neurofibromatosis, News, Video | , , , | 2 Comments

Watch the history of the Texas NF Foundation Video!!!

Texas NF Foundation 15th Anniversary VideoI have a terrific video for all of you!

About 10 years ago, I was asked to help participate in a video detailing the history of the Texas Neurofibromatosis Foundation. Our 15th Anniversary was coming up and Bob Hopkins, the Executive Director at the time, wanted to recognize the people who brought us to where we were while also helping educate the new trustees, volunteers and patients about the history of the foundation and all of the ground-breaking work we helped initiate.

I’ve just watched it for like the 100th time and I’m still learning more stuff!

Click here for the link to the Texas NF 15th Anniversary Video!

Continue reading

May 18, 2007 Posted by | Awareness, Friends, Fun, Fundraising, neurofibromatosis, Texas NF Foundation, Video | 4 Comments


freehugs1.jpgI had several topics that came to my mind that I wanted to post. I’ll stick to one for now. What’s on my mind today ? FREE HUGS. I just saw a video on YOUTUBE. My video is on the same site. I saw the video and it literally made me want to cry. I was impressed how many of us just would be happy with a hug.

I know were I can go to get a hug, when I need one two or three. You know who you are. I really thank you for that. How many of you believe a hug can make a difference of your day? Watch the video free hugs. Post how you feel after you dry your eyes. Here’s the link

February 26, 2007 Posted by | Video | , , , , | 10 Comments