neurofibromatosis cafe

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


477733757_e92802af071.jpgHey Reggie,You most definitely can share this with Lou. If you put it up as part of your blog I’ll be able to answer directly on that.

We do hear gunfire everyday and bombs explosions 3 – 4 times a week. The gunfire I think is from the practice range, but the major explosions I have yet to figure out if they are incoming or outgoing, probably both.

When I originally applied for this job a lot of people ask me why I would want to work in war zones…….I never really told them why but I will tell you why. Continue reading

September 27, 2007 Posted by | Awareness, Friend, Friends of NF, neurofibromatosis | , , , , | 107 Comments


horse_2.jpgI wanted to let you know we are home from a TERRIFIC weekend at aShelley
wonderful place called CAMP FOR ALL, In Burton Texas. It is an amazing place for persons with disabilities. I would give this place a five star rating. A big thank you to the kind staff. It was my first time and will NOT be my last time. Looking forward to next year. I also want to thank the Texas Neurofibromatosis Foundation for Helping my family to be a part in the Fun. 🙂 Let spread the word and try to have more campers next year. I hope you will join us next year. You will love it. PHOTOS

September 9, 2007 Posted by | Awareness, Friends, neurofibromatosis, NF1, NF2 | , , , , , , , , , , | 201 Comments

Reggie’s Blog Makes Google’s Top Ten!!!

google_logo1.jpgReggie has achieved what major corporations spend thousands upon thousands of dollars to achieve…With no money…With no budget… is ranked #7 in Google!!!

Go to the Google search engine browser, type in “neurofibromatosis” and Reggie’s blog comes up #7!!! Or, just click on here!

Congratulations Reggie and to all the bloggers who have made Reggie’s blog one of the premier sites for neurofibromatosis education, comfort and fun! Woo-hoo!!!

September 6, 2007 Posted by | Awareness, Links, neurofibromatosis, News, nf | , , , , | 7 Comments


729368094_5026a66232.jpgHey 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.

September 6, 2007 Posted by | A MESSAGE FROM REGGIE, Friends, Fun, NF1, NF2, Texas NF Foundation | , , , , , , | 51 Comments

Questions from Naomi in Japan

bild_027_1151395573.jpgHi Reggie. I am 23 years old and currently living in Japan. Today
was the first time I had ever seen a woman with NF. I was getting
ready to order food from McDonalds, and I noticed that the woman
in front of me. From behind, I hadn’t there was nothing out of the
ordinary, but I soon noticed her enlarged bottom lip and a bit of
sagging to only one side of her face. It was very intriquing to me
and I instantly became very interested to learn more. I was, as
I’m sure most people are, too nervous to “just ask”, as well as
ask in JAPANESE which is my SECOND language and I did not want
anything to get lost in translation. Continue reading

September 5, 2007 Posted by | Medical, neurofibromatosis | , , , | 4 Comments

A new friend has joined us, Patricia Stokley

l_934dd3b2740501532f7c7e493f37cadd.jpgHi 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) Continue reading

September 2, 2007 Posted by | A MESSAGE FROM REGGIE, Friend, neurofibromatosis | , , , , | 85 Comments