neurofibromatosis cafe

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

Gillian Anderson of the “X-Files” added our link on her site

gaw.jpgDear Lou,

We’ve added a link to Reggie’s phenomenal web site.

It’s under Links and Resources on our NF page: (scroll down).

Best wishes to you all!

The Official Gillian Anderson Web Site

August 31, 2007 Posted by | neurofibromatosis | , , , , | 21 Comments



I hope you are enjoying the blogs and the fun we are having here, as we learn about Neurofibromatosis. We are here for everyone who has NF or has a family member with the disorder. I support you as well as my friends on my blog. Let’s continue to share our stories and information with each other about NF. With all that being said, I would like to share a photo with you. My friend ADGIANT or better known as Mr. Smart Mouth. This was a dream come true shoot. The only bad thing about this, is the photographer didn’t let me finish.

August 29, 2007 Posted by | Adgiant, Friends, Fun, Just Ask!, neurofibromatosis, nf, NF1 | , , , , , , , | 105 Comments


pictures-of-graduation-and-austin024.jpgI received this wonderful message from Tammy. Tammy was nice enough to let me share this message. I am always encouraged when I get messages like I have been getting from you all. It’s good therapy for all us to meet here and support each other in time of need. Oh and not to forget all the fun we lave here, as we learn about NF together. Lets start supporting Tammy and Austin. That’s what we do here right. Maybe we can talk Tammy into send a picture to add with her blog. What do you say Tammy? 🙂 Hope you see you here soon. Continue reading

August 26, 2007 Posted by | Awareness, neurofibromatosis, nf, NF1, NF2 | , , , | 97 Comments



Last night’s Houston Roller Derby action was the best I have ever seen. Lou and I were close to the action on the floor and almost had a couple ladies land in our lap. Maybe we’ll be luckier next time!

All of the teams did a terrific job. I had no idea how much talent and physical strength you need to be a skater until we sat up close. You can see all the action that’s going on, not just what the jammer is doing.


I saw Beverly Kills throw a block on one skater that I felt this morning!

What I really like about Houston Roller Derby is that the skaters will come up to you and talk to you and thank you for coming! The famous skaters Dementia, Mistilla the killa and Jekyl & Heidi (they’re all famous in my head) were very nice to me and took lots of photos with me. The roller derby ladies make me feel like they are my fan, just as much as I am a fan to them. If you want to feel like you have a fan, all you have to do is go to one game. You will be hooked. Believe me you will enjoy the game. I always enjoy myself.

IMPORTANT NOTE: The Colonel is crazy!!!

August 20, 2007 Posted by | Friends, Houston Roller Derby, neurofibromatosis, Photos | , , , , , | 102 Comments


Houston Roller Derby

Hey friends, I want to make sure all of you know about Sunday’s Roller Derby Bout.

I will be there for sure. These ladies need our support. They are tough in the ring, but when you meet them, you can really see how kind they are.

I don’t know of any sport where the stars of the game treat the fans like they are the stars.Houston Roller DerbyHouston Roller Derby And by no means this is an attack on the other sports I enjoy watching. Everyone at the Houston Roller Derby has been extremely supportive of me and my mission and I’m happy to be able to return the favor. I look forward to seeing all the fans tomorrow! It’s going to be TREMENDOUS!!! (SEE BELOW FOR ALL THEDETAILS!!!) Continue reading

August 18, 2007 Posted by | Houston Roller Derby, neurofibromatosis | 2 Comments

Happy Birthday, Reggie!!!!

640.jpgHappy Birthday, Reggie!!!

Reggie is 43 years old today! Please give him a hard time.

Now Reggie, we don’t want you going back to wherever this photo was taken!!! Well, not without me!!!


August 17, 2007 Posted by | neurofibromatosis | , , | 25 Comments


anchorageskyline.jpgSome time ago I received a heart warming message from John in Alaska. He too is a great parent that has a child with neurofibromatosis. I enjoyed reading his message and I spoke with him about sharing his message here, like I have done with some of your messages. I think its a great place to show John that he is not alone and we support him. Read his message and lets show some love to John. He will be happy to see the support he gets here.

(FROM JOHN) Continue reading

August 15, 2007 Posted by | Awareness, Friend, Friends, Just Ask!, neurofibromatosis | , , | 4 Comments

What I did on my summer vacation!

1100001133_07577994c3_b.jpgI learned how to use a digital camera, sort of.

Stay tuned for photos to be posted at your favorite Flickr site, or Reggie’s!

I missed you guys…in a perverse sort of way!

– Adgiant

August 13, 2007 Posted by | Adgiant, Friend, Fun, neurofibromatosis, Photos | 23 Comments



Today was my second Astros game. Before the game, my friend Lee told me, “You have to have a Astros shirt.” So went to one of the local stores and Lee said pick the one you want. This is a cool shirt. That was the first thing we did. The high before the game was the food. I had the best Chile cheese hot bog ever, and a nice cold Coke to wash it down. mmmmm! By the way this is my first Astros shirt. I send thanks to my friend Lee, who invited me to join him with his daughter Rebecca and her friend Blake. Both are very nice and they treated me very well. We enjoyed the game, even though our team did not win, we still support the Astros and I will be happy to see them anytime. Go ASTROS! You are winners in my eyes. Please view the pictures from the game and lets blog about it.

August 12, 2007 Posted by | About Me, Astros Game, Friends, Fun, News | 7 Comments



Today I had a terrific afternoon. The Texas NF Foundation had its first picnic in Houston Herman Park. I’m so happy that my family and I had a great day in the park. I met a lot of new friends that have both NF1 AND NF2. I was blessed by each and everyone. Before today, I was not 100% sure if I would go to camp or not. Well I’m 100% sure now. I will be there. I think the new friends I met today was a big part of why I’m going. I found myself talking to other people about going. I think a lot of them learned of the camp today. All seem to want to attend. I would like to see a huge turn out. I will be taking lots of pictures. Be ready to smile.

By now we have seen my hero. Brian Carr. I met Brian and his Mom Virginia. Brian has NF2 and he agreed to have a picture with me. I so happy he did. Brian will visit my blog from time to time. Let’s show him how we do it here. SUPPORT ! I pray for the best for Brian and all of the other wonderful people I met today. Thank you Brian, and I hope to see you at camp. Think about it. You can find a few more photos from the picnic on my photo page. Cindy will have them as well. Thank you Cindy Susan, and the Texas NF Foundation for a terrific picnic.

August 5, 2007 Posted by | A MESSAGE FROM REGGIE, Blogroll, Friends, Fun, Just Ask!, neurofibromatosis, News, NF2, Texas NF Foundation | 77 Comments