neurofibromatosis cafe

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


Do you think the Heritage Building makes me look fat?Hi Everyone,If you are visiting this blog for the first time, welcome!

The purpose of this blog is to serve as a meeting place for people who have NF, or who knows somebody with NF or is just interested in learning more about NF. But no matter how we are connected to NF or this blog, I know we all share the same goal: to find a cure.

It is my personal goal to increase awareness of NF.

I believe the more people who know about NF, the easier it will be to raise money for research while maybe allowing us more freedom and opportunity to lead a more normal life. Without stares. Without judgement. Without hesitation.

With the help of a few friends, I have created this blog plus a website and have Flickr, YouTube and MySpace accounts. I have linked them all together to become more visible to Google and all the search engines. My technical friends have explained to me that the more l link to related websites and vice versa, the stronger ALL the sites will be.

So, with that in mind, I have taken the liberty of adding many NF related links to my blog in the hope that they will make it easier for people to find out more information about NF while also making all the urls more visible to the search engines.

In kind, I would appreciate any help you can give me in adding my links to your blog and/or website. Not only will you be helping me become more visible, you will be boosting your visibility as well.

I have found through my association with the Texas NF Foundation that there is strength in numbers and if we all work together, there’s no limit to what we can accomplish. Right now, one of my earliest NF doctors, Dr. Vincent Riccardi, is in Lisbon, Portugal speaking at the European NF Meeting wearing my tshirt. He assured me that by the end of the conference, everybody will know about

You can check out the conference at:

I thank you for your time and allowing me to tell you about what I’m doing. I do hope that you will join me. Please post to my blog. Visit my website. Send me photos, Send me links. Tell me your stories. I’ll share you mine.

I look forward to meeting all of you through this wonderful resource. Please write back!



PS – Please help support this site by purchasing a “Just Ask!” t-shirt! All proceeds go toward raising awareness of NF. To purchase, just click on and go to STORE

April 28, 2007 - Posted by | A MESSAGE FROM REGGIE, CTF.ORG, Links, neurofibromatosis, News, Texas NF Foundation | , , , ,


  1. You are a rock star, Reggie! I don’t know how you do it, but you do.

    Comment by adgiant | April 28, 2007 | Reply

  2. He’s smart, handsome and he has this magnetism and a charm I’ve been trying to get from him. Great work Reggie and to any new bloggers, we welcome you with open arms. For those who might be seeing this for the first time, Reggie is truly a star in the eyes of anyone who has had the pleasure of meeting him!!(and I will get that magnetism thing some day)
    Jerry T

    Comment by Jerry T | April 28, 2007 | Reply

  3. Yea yea yea. Flattery will get you no were. Just kidding. Kind words, but surley you can think of a lot more. 🙂

    Comment by Reggie Bibbs | April 28, 2007 | Reply

  4. I was hoping flattery would get me a bigger piece of cake!!

    Comment by Jerry T | April 28, 2007 | Reply

  5. Well it might. We will have to see about that.

    Comment by Reggie Bibbs | April 28, 2007 | Reply

  6. I’m doing this from my cell phone as a test. Reggie is a big, fat idi…

    Comment by Lou | April 28, 2007 | Reply

  7. Yes it works.

    Comment by Reggie Bibbs | April 28, 2007 | Reply

  8. Works like a champ!!!

    Comment by adgiant | April 28, 2007 | Reply

  9. This cell phone access is pretty darn handy! That means I don’t have to be on a computer to insult Reggie, I can do it from anywhere!!!

    Comment by Lou | April 28, 2007 | Reply

  10. YOU BETTER WATCH IT! I have a lot of fans here.

    Comment by Reggie Bibbs | April 28, 2007 | Reply

  11. It’s pretty hot out today, can I borrow one of those fans?

    Comment by Jerry T | April 28, 2007 | Reply

  12. Reggie is cool

    Comment by Shelley | May 9, 2007 | Reply

  13. Thank you Shelley,

    Comment by Reggie Bibbs | May 9, 2007 | Reply

  14. hi ,
    You did a great job, I would ask if you could help, I have a friend since we were children, I met him after 19 years, he is in Libya and he have NF, as you know the health service in Libya very bad , specially with people have NF. my question what kind of help can we give to him.
    sincerely yours

    Comment by Ahmed | March 31, 2013 | Reply

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