neurofibromatosis cafe

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



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


  1. Week before was the Dallas NF Picnic. I took bunch of photos with my new digital camera (Nikon D80). What would be the best way to send them to you or to add them to this site.

    Comment by John P | August 5, 2007 | Reply

  2. Just email 5 or 10 at a time. Or you can copy them to a disk and mail it to me.

    Comment by Reggie | August 5, 2007 | Reply

  3. John could upload them to your Flickr account too. All he has to do is download the free Flickr uploader at

    He could also create his own flickr account and share the photos that way.

    Comment by adgiant | August 6, 2007 | Reply

  4. I hope John reads this, It sounds like a great idea to me.

    Comment by Reggie | August 6, 2007 | Reply

  5. Hey Brian, are you out there? We would love to hear from you!!! My question is how long were you able to talk to Reggie until he started to get on your nerves? It usually takes me about two minutes before I start wishing my insurance agent would call wanting me to review my new 500 page policy with him. Welcome to the blog! Don’t worry, we’re not all like Reggie. Most of us are nice!

    Comment by adgiant | August 7, 2007 | Reply

  6. You are gonna make me call my friend, that is a specialists on fixing knee caps.

    Comment by Reggie | August 7, 2007 | Reply

  7. Had a good time meeting new people at the picnic. Adgiant, were you there? Reggie didn’t get on my nerves (I probably got on his!) I am so glad I met him and the others and I hope to get to see everyone more and meet new people. My computer is still not doing well so I may not be on here much for a bit. Hopefully, things will get back to normal soon.
    Good night everyone!

    Comment by Brian | August 7, 2007 | Reply

  8. Hey Brian, welcome to the blog! Glad to see you online. Reggie has told me lots about you. He still hasn’t mentioned why you are his hero. Can you shed some light on this mysterious comment? I figured you must have saved his life by taking a bullett meant for him while you were both Navy Seals but Reggie won’t talk. I guess you guys pledged an oath while you were battling evil-doers for the good of our nation! Don’t worry, your secret is safe with me. It’s not like I’m going to blab all over the internet that you guys were secret spies for our country and probably have done a lot of things we only see in James Bond movies.

    Comment by adgiant | August 8, 2007 | Reply

  9. Hey Lou,

    Your are right. It’s James Bonds material. Hush up! As as Judge Judy would say SIT DOWN!! Anyone don’t you have country music videos. Your turtle got run over.

    Comment by Reggie | August 8, 2007 | Reply

  10. Glad to hear you coming to camp. I be there with the camera as usual. Working on the photo on Flickr, but may send them to you on another site I use.

    Comment by John P | August 8, 2007 | Reply

  11. Welcome to the blog Brian!
    Hope ya’ll have a good time at camp, wish we could go but we are just so far away!! Post lots of pictures Reggie!

    Comment by Emily | August 9, 2007 | Reply

  12. Hey friends I’m having a computer problems. If I haven’t answered you messages that is the reason. I hope to have it fix tomorrow.

    Comment by Reggie Bibbs | August 9, 2007 | Reply

  13. Emily do you have NF where are you from. Because you said you are to far away to come to the picinic. You may have to pack up and take a road trip and come to one.

    Comment by Brian | August 9, 2007 | Reply

  14. Good thought Brian. I agree we have to plan something. Brian I’m having a problem with my email. I’m able send a email from here, but not from my email server. You can try to email me. and I will answer from here. I’m happy to see you on the blog.

    Comment by Reggie Bibbs | August 9, 2007 | Reply

  15. I think Emily, Shelley, Amy and Eleanor all need to go to camp!

    Comment by adgiant | August 9, 2007 | Reply

  16. to adgiant Do you know emily does she have NF and do you know where she is from she said she is to far away. I think she should take a road trip where ever she is from and go to a picinic. also I am planning on trying to go to camp next year.

    Comment by Brian | August 9, 2007 | Reply

  17. Brian that is cool. I know if you do just like your are doing now. Just ask Emily, she will see your question here. Brian if you want to go to camp this year its not to late to let the foundation know about it. I will be there and will take as many pictures as I can. You can be in some of them. You can ask anyone questions and they can answer. Just ask adgiant Lou, about his love of country music. especially ask about his turtle getting run over by a pick up truck. May he never forget those words. Don’t believe the he would have his gums scraped before listing to country music.

    Comment by Reggie | August 9, 2007 | Reply

  18. Lou it would be nice if Emily Shelley and of course I will be there, came will be fun and we can cook up a good plan to get Lou in a spot where he has to listen to good old home down country music. Oh and make him learn the cotton eye joe. I LOVE THE IDEA. What do you think Brian Emily Shelley ?

    Comment by Reggie | August 9, 2007 | Reply

  19. Just think of all the fun you guys would have if you went to camp together. Maybe you could bring a laptop with you and post blogs from camp and add photos to flickr as they occur. This year’s theme is Hollywood I believe so I can only assume there will be some videos involved that we could post on YouTube. You all could become stars just by showing up!

    Comment by adgiant | August 9, 2007 | Reply

  20. Ok, it’s time that everyone came clean and say how old they are, where they live, how long they have lived with NF and to send a photo so we know with whom we’re talking.

    I’ll go first.

    My name is Lou Congelio, I own an advertising agency in Houston. I’m 51 years old and I’ve been involved with the Texas NF Foundation for 18 as a volunteer, trustee and as a board member. I do not have NF but many of my close friends do. I will post a photo of myself in Reggie’s Flickr account.

    OK, who’s next?

    Comment by adgiant | August 9, 2007 | Reply

  21. Ok. I’ll go next.

    My Name is Reginald, But everyone calls me Reggie. I’m not as old as Lou, lol. I hope to be some day. I have a birthday this month. I will be 43 on Aug 17th. I have been involved with the a very long time. Dr. Riccardi and Bob Hopkins. Both are very good friends of mine. I have had other jods Goodwill Inds of Houston. Fond memories of that. I also wowrked in the NF Office in Houston as one time. I then went in to business for myself. Upholstery. during that time, I stop that and gave all my time to help my brother with his illness due to NF. Because of Ronnie and what all I have gone through I wanted to start my website. The rest is the beginning of that great thing we have going here. Terrific isn’t it?

    Ok who’s next?

    Comment by Reggie | August 9, 2007 | Reply

  22. Brian – I dont have NF.. my 4 year old does. He was diagnosed with NF1 last fall. If you click the link under my message you can see his CaringBridge page and read more about it. We are in Connecticut right now, my husband is military so that is why we are here. We had been in South Carolina for a few years before this.

    I would LOVE to take a road trip and meet everyone especially Reggie. One day that will happen I hope!

    Comment by Emily | August 9, 2007 | Reply

  23. Oops didnt see about our introductions! lol

    I’m Emily, I’m 23 years old and as I said before, I’m currently living in Connecticut. I have 2 sons, Elijah will be 4 this weekend and he has NF1. James is 2 and he does not have NF. I am also pregnant with our 3rd child and am hoping that this one will also not have NF, but of course I will love it all the same either way!

    If you click on my name it will take you to my son’s page and you can see my picture there.

    elijah stiteler

    Comment by Emily | August 9, 2007 | Reply

  24. Thanks Emily for sharing elijah’s website. I’m sure he will be happy to hear from someone else. Oh Emily I would love to meet you . I hope it’s sooner then later. eather way would be good. Never did get a responce from Lou about my comment. What do you Ladies think about my idea. Feel free to jump in on this John and Brian. I think all of use would like to see Lou Do that dance. Oh something better . River Dance. That’s it. Make him River Dance.

    Comment by Reggie Bibbs | August 9, 2007 | Reply

  25. John I will take a look at your photos this morning. You want me to add my photo section?

    Comment by Reggie Bibbs | August 10, 2007 | Reply

  26. Emily that is cool God Bless your husband I have a cousin that is Kuwait right now. and for adgiant I want to know more about your turtle my mom and me love turtles I have saved 2 out of the middle of the street by my house

    Comment by Brian | August 10, 2007 | Reply

  27. haha Yes lets see him do River Dance! And he really has to get into it too, he better smile while he’s dancing!!

    Comment by Emily | August 10, 2007 | Reply

  28. Emily my thoughts and prayers go out to your little boy who has NF. and and my thoughts and prayers are with your family. also I just wanted to say my thoughts and prayers go out to all the people who have NF.

    Comment by Brian | August 10, 2007 | Reply

  29. Emily I also like your little boys pictures.

    Comment by Brian | August 10, 2007 | Reply

  30. I don’t do amything that harms penquins or turtles. (That’s for you, Brian.) And I DO NOT DANCE BUT IF I DID THE LAST THING THAT I WOULD DANCE WOULD BE THE RIVERDANCE which ranks only slightly above the Chicken Dance in sophistication and talent.

    Comment by adgiant | August 10, 2007 | Reply

  31. AdGiant I love turtles and penguins. I saw the penguins at Moody Gardens and fell completely in love with them .they are so cute. if I could and had a place cold enough for one I would like one as a pet but I love turtles too.

    Comment by Brian | August 10, 2007 | Reply

  32. adgiant actually I forgot to tell you one turtle that I saved out of the middle of the street I brought it home and a couple days later it had babies the turtle was in my backyard and the babies showed up at my garage door

    Comment by Brian | August 10, 2007 | Reply

  33. YO Everybody

    Comment by Shelley | August 10, 2007 | Reply

  34. Brian, Eleanor and you have the most views. Both of you are popular. Keep it up you are making me look good.

    Comment by Reggie | August 10, 2007 | Reply

  35. Yo! Shelley, what you say about it?

    Comment by Reggie | August 10, 2007 | Reply

  36. HI My name is Shelley Im 42 dont have NF I used to work with Reggie at Goodwill

    Comment by Shelley | August 11, 2007 | Reply

  37. Brian, my brother had a small box turtle as a pet when he was young. It was about the size of a matchbook. As far as entertainment value goes, “Bob” was a bust. However, he would fetch my brothers slippers at night! One day, “Bob” mysteriously disappeared and we’ve been wondering whatever became of him ever since. Legend has it that he waddled a little too close to a crack inside the fireplace and fell to his doom but that report has never been substantiated. I guess we’ll just have to take comfort in knowing he’s in a far better place whether that’s in heaven or in our basement.

    Comment by adgiant | August 11, 2007 | Reply

  38. Shelley thanks for being a part of the blog, and for your direct emails. Man that was the good old days when we use to work there. Tell everyone about your job duties.

    Comment by Reggie | August 11, 2007 | Reply

  39. Used to hang clothes up at Goodwill

    Comment by Shelley | August 11, 2007 | Reply

  40. I love meeting new people music crafts and good cup of either tea or coffee

    Comment by Shelley | August 11, 2007 | Reply

  41. Okay Lou so you dont do Riverdance.. well how about the Macarena?? Thats only slightly humiliating, lol!
    Sorry I’m not around much guys, I’m so sick with this pregnancy, but hopefully in a few weeks I will get over that and be back to normal! Its so hard taking care of 2 little kids when I can barely get out of bed 😦

    Comment by Emily | August 11, 2007 | Reply

  42. emily its all good it will be ok the pregnancy will be over soon enough hang in there and be tough

    Comment by Brian | August 11, 2007 | Reply

  43. I never been involved in a blog lol also love to email

    Comment by Shelley | August 11, 2007 | Reply

  44. OH I forgot one of my job duties at Goodwill was to hassass Reggie

    Comment by Shelley | August 12, 2007 | Reply

  45. You did a terrific job. lol

    Comment by Reggie Bibbs | August 12, 2007 | Reply

  46. Hey Emily guess what? You have too many friends here to let you feel down. Of course none of us guys knows what its like to have a baby. We can support you here, and keep you laughing, like you have done for us. After the baby is born you will be back on your feet again in no time. By the way, I have a feeling that He’s Backkkkkkkkkkkkkk! Yea Let give him a hard time. I bet he will have some smart you know what comment about this comment.

    Comment by Reggie | August 12, 2007 | Reply

  47. Hey Lou dont know if im going to camp Iknow this if you and Reggie could get me away from my apt lol

    Comment by Shelley | August 12, 2007 | Reply

  48. Emily I hope you are doing ok haven’t heard from you in a while

    Comment by Brian | August 14, 2007 | Reply

  49. Oh Emily, Come out to play.Really we hope all is well and your are just resting Emily. Stay strong and know we are here and you have lots of support here.

    Comment by Reggie | August 14, 2007 | Reply

  50. Everybody having fun here ?

    Comment by Shelley | August 26, 2007 | Reply

  51. I know I’am

    Comment by Reggie Bibbs | August 26, 2007 | Reply

  52. Me too Reggie

    Comment by Shelley | August 27, 2007 | Reply

  53. Hey, I can’t believe I’ve been missing out on all this fun…let me try to catch up…
    I have no turtles…I am 37 and work at NewsChannel 9 as an assignment Editor and hopefully soon Producer/Reporter. I have been a stay at home mom for 14 years so working is weird yet exciting for me. Both my kids were diagnosed with NF very recently.

    Comment by Eleanor | August 29, 2007 | Reply

  54. hey Eleanor whats been going on

    Comment by Brian | August 29, 2007 | Reply

  55. What NO turtles! It’s ok you can have Lou’s. It can get a new one. He will keep is pick up truck. Welcome back.

    Eleanor you will have that Producer job soon. Tell us about the work? Is the producer the one that gets to talk in the ear of the news Anchor and other reporters. I have always wanted to know how that works.


    Comment by Reggie Bibbs | August 29, 2007 | Reply

  56. That’s right Reggie. The producer is responsible for the content of the show and sits in the “booth” with the director while the show is on and talks to Anchors and reporters when necessary. I have a degree in Broadcast Journalism but never really worked in the commercial market till now. I hope to start producing/reporting soon. Things have been moving pretty quickly.

    Comment by Eleanor | August 29, 2007 | Reply

  57. Hey Brian,
    You guys have been going nuts around here!!! I am just catching up on comments around here and on Tammy’s … I think Shelley is right about the babysitter! Maybe we should start a round of Kumbayah.

    Comment by Eleanor | August 29, 2007 | Reply

  58. Eleanor that is Lou stirring up the hornet nest.

    Comment by Reggie Bibbs | August 29, 2007 | Reply

  59. I agree Eleanor I agree 100%

    Comment by Brian | August 29, 2007 | Reply

  60. Reggie that is funny that you said Lou is stirring up the hornet nest is that what it is a hornet nest

    Comment by Brian | August 30, 2007 | Reply

  61. That is not the only thing he is stirring

    Comment by Reggie | August 30, 2007 | Reply

  62. Reggie and Brian just throw Lou in the lake lol

    Comment by Shelley | September 12, 2007 | Reply

  63. I am new and I think I might be missing something, I just want to know “why is everyone picking on Lou is he is inocent as he sounds”?

    Comment by Patricia Stokley | September 15, 2007 | Reply

  64. Hi Patricia, I’m happy you are here on the blog. Every one here is always having fun. Lou is a very fun guy and he keeps us talking on the blog. Its all in fun. I’m sure we will see him back on soon. We always talk.

    Comment by Reggie Bibbs | September 15, 2007 | Reply

  65. ok so we should all pick on him, lol

    Comment by Patricia Stokley | September 15, 2007 | Reply

  66. Yes we should pick on Lou. It makes all of us happy here, Just as long as we remember who the star is. lol. Don’t worry Lou Likes it.

    Comment by Reggie Bibbs | September 15, 2007 | Reply

  67. I agree so Reggie if you are the star what does that make lou “the villian” lol

    Comment by Patricia Stokley | September 15, 2007 | Reply

  68. LOL! WOW! Patricia that’s a good one. Your are going to make a hit on here.

    Comment by Reggie Bibbs | September 15, 2007 | Reply

  69. Reggie Lou needs the harrassment

    Comment by Shelley | September 16, 2007 | Reply

  70. Shelley, thats the story of my Maybe O will just go get some well needed coffee.

    Comment by Reggie Bibbs | September 16, 2007 | Reply

  71. LOL the best place is Starbucks after that is Folgers the flavored kind

    Comment by Shelley | September 17, 2007 | Reply

  72. I’m drinking Folges right now. My second cup right now. some people want martinis in the morning, I want coffee.

    Comment by Reggie Bibbs | September 18, 2007 | Reply

  73. Cool

    Comment by Shelley | September 20, 2007 | Reply

  74. Starbucks is one of my fav. my husband calls it 4bucks, but it is what i like i tell him, but most of the time i do drink folgers, it is more afforable, and i put the flavored cream in my coffee,

    Comment by Patricia Stokley | September 23, 2007 | Reply

  75. LOL! I like that one. 4bucks. And don’t forget Folgers is Mountain grown. I remember that from one of the old commercials.

    Comment by Reggie Bibbs | September 24, 2007 | Reply

  76. I rember too. does that give our age away lol

    Comment by Patricia Stokley | September 25, 2007 | Reply

  77. Well I guess it does. lol Of course I was very very young.

    Comment by Reggie Bibbs | September 26, 2007 | Reply

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: