neurofibromatosis cafe

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

TEXAS NEUROFIBROMATOSIS CAMP FOR ALL WEEKEND FUN!

Today is September 7th.  Just returned for Camp For All.  If you have never atten The Texas Neurofibromatosis Foundation’s, Camp For All. Trust me. You must attend next year.

I’m feeling really emotional.  Joy and sadness.  I met so many new friends as well reunited with friends from prevouis years.  Some of my friends don’t have NF but attended the camp to support me and have fun.

There are lots of Activities to enjoy.  What I enjoy mose of all.  When a parent or someone that met me on myspace, facebook or the local news, they come to talk to me and just want to talk.  It’s a feeling that I could never express in words.  It’s the greatest support one can ASK for.  For me and the person I have the pleasure of talking to.  It’s like getting a new family member.  And it hurts when it’s time to go home.

The joy is that you can look forward to the next year.   And it gets beter than that. You can keep in contact via email until the next camp. I want to say thank you to all of you for a greak weekend. If you see your photo and you want to add comment please do so. Add you name to it as well in the comment box.  We would like to know ideas you have for nexy year. what you will like to see to make it better. I will pass your ideas to The Texas NF Foundation.

PHOTOS

September 7, 2008 - Posted by | A MESSAGE FROM REGGIE, Awareness, Friend, Friends, Fun, neurofibromatosis, nf, NF1, Texas NF Foundation | , , ,

48 Comments »

  1. Wow, what a great time!!! Kudos to Cindy Hahn for single-handedly putting together such a great camp!!! It was well-organized, well-run and well, just terrific!

    Comment by - the blogger formerly known as Lou | September 7, 2008 | Reply

  2. well reggie me (christine) and madison had a awesome time even thow me or madison dont have NF i wanted to go so me and madison can meet new people and get to know people that other people are scared to talk to and i loved everybody at NF camp it was so much fun i would of liked to talk to you more but i know there was not alot of time during the day and i saw you very busy all the time but that is ok we enjoyed our self alot but well shore be back next year for shore i hope the NF foudation well give us more time there at camp so visit more people and have more talks and all that to me that is most important in getting to know somebody talking to them maybe they well add some kind of program like that at camp next year where you can hang out with a new person for so long and get to know them and go around the camp ground together or maybe even a sacvanger hunt would be totally cool too cause i noticed that some people couldnt do somethings because of there NF and that is ok too everything happens for a reason and time well only tell till then but reggie i am so glad john lister my cousin and his son grant lister invited me and my daughter to go cause it was awesome and we had fun and reggie i leave with this comment to you that i love your family and for them inviting me and my daughter into your home it was very nice and we liked it alot well reggie LOVE ALWAYS CHIRSTINE SMITH LIVE,LAUGH AND LOVE

    Comment by christine smith | September 7, 2008 | Reply

  3. Count down to the 18th Annual NF Camp if held on Sept. 11-13, 2009, weekend following Labor Day is 369 Days. This year camp was to say the Best Ever. Reggie, who was that behind me taking pictures of the group. Was that Lou? Now I think of it, he was behind me. Maybe on our 20th Camp, we might be able to attend the camp another day or two. I know thats what they did on the 10th Camp, started on Thursday, that was in 2001. I think one of the things that put this year over the others, was when we gather at the camp fire Saturday night, to reflect and what to wish for.
    The count was little down this year, but regardless, it was a great camp.Those who came to camp in the early years, hold no candle to this camp.

    Comment by JohnP | September 7, 2008 | Reply

  4. I wish there was a way we can edit our post, I wanted to correct – Those who came to camp in the early years, hold no candle to this camp.

    Comment by JohnP | September 7, 2008 | Reply

  5. John I can do that for you. What do you want to edit?

    Comment by Reggie Bibbs | September 7, 2008 | Reply

  6. Thats ok, I said what I wanted in my last post…Thanks

    Comment by JohnP | September 7, 2008 | Reply

  7. Christine I was more then happy that all of you was able to spend some time at our house. Everything worked out great. I do hope that we can do it again next year.

    Comment by Reggie Bibbs | September 7, 2008 | Reply

  8. Reggie,
    Thanks for inviting us; I had a great time, even if I couldn’t get my hawgs into town cuz you know who was blocking the road. Kudos to the organizer and the staff. “Rock Of Ages” has been stuck in my head since yesterday; we need to get together and play sos that I can exorcise that demon.
    I also think that if we are now your posse, we need cool names. Work on those and get back to me. I already have an idea for Lou’s nickname: Tiny L.
    And now, as a shout out to Lou, a bunch of exclamation points:
    !!!!!!!!!!!!!!!!!!!!!!!!!!

    Comment by william | September 7, 2008 | Reply

  9. William. We need to work on three songs. And Make sure we play. I was ask why didn’t we play. Dawn Erik and Kline played and I heard they did a wonderful job. They will play for any Benefits. I will be sure to keep them in mind. I have a name for the band. Reggie NF Band, NF Defeaters. I can think of more. What about Confusing lyrics or notes.

    Comment by Reggie Bibbs | September 7, 2008 | Reply

  10. I wanna be “Deaf Lou” or is it “Def Lou?”

    Comment by - the blogger formerly known as Lou | September 7, 2008 | Reply

  11. Quite would be a good name for you.

    Comment by Reggie Bibbs | September 7, 2008 | Reply

  12. I’m just glad we left before William had the chance to play anything in front of an audience. Hey, I wanna come back next year!

    Comment by - the blogger formerly known as Lou | September 7, 2008 | Reply

  13. I’m sorry we didn’t play. A few told me they wanted to hear us. Well they will next year.

    Comment by Reggie Bibbs | September 8, 2008 | Reply

  14. Camp was great again this year. I only wish we had more time, the weekends always seem to pass so fast. Who knows maybe next year we can start on Thursday or Friday morning????

    Thanks again Reggie, I enjoyed out time we spent talking.

    Comment by Mike | September 8, 2008 | Reply

  15. Reggie, camp sounds like a lot of fun and a great chance to meet new people and see old friends.

    How about “Reggie’s Just Ask Band”? Lou, “Def Lou” sounds too much like Def Leppard so you might end up with a copyright infringement problem, but I know a good lawyer (although usually he is right behind the ambulances and tow trucks)

    By the way, Kirk Gentle, the guy who has ridden in the bicycle Race Across America for NF and MD Anderson several times has a band called “Dead Serious Band” ( I doubt it is that serious though!)

    Maybe y’all could get together and jam !
    http://www.deadseriousband.com/kirk.htm

    Comment by Bart | September 8, 2008 | Reply

  16. I was too chicken to go to camp this year

    Comment by Shelley | September 8, 2008 | Reply

  17. Hey, Bart, how about “Dead Band Walking?” It seems especially appropriate for Reggie’s band.

    Comment by - the blogger formerly known as Lou | September 8, 2008 | Reply

  18. Sounds good Bart. How about “Wish We Could Jam” or “Lou not included”

    Comment by Reggie Bibbs | September 8, 2008 | Reply

  19. Comment 14

    Mike camp was really fun. That was really fun and we do need more time so we can spend more time talking and sharing stories. Lets do this. pass the word to everyone that went to camp to post what they would like for next year. Maybe if we get enough requests maybe we can have that Thursday or early Friday.

    Comment by Reggie Bibbs | September 8, 2008 | Reply

  20. There may be some type or rule at the camp, no loud or unnessary noises. Need to check on this for next year. That be great if we can start the camp on noon on Friday, at CAMP CAMP we did that, those who were there at CAMP CAMP. If not, lets all meet in Brenham at the Blue Bell plant to take a tour, then have dinner before heading out to CFA (CAMP FOR ALL).. Just a thought.

    Comment by JohnP | September 8, 2008 | Reply

  21. I didn’t think any of that was going on. I think think Cindy would have put a stop that. On another note Lisa Bold is in the hospital. I know she would not mind if you kept her in your prayers. She had a great time at camp even though she was not feeling hr best. When I talk to her I will let her know she has friends thinking about her.

    Comment by Reggie Bibbs | September 8, 2008 | Reply

  22. The name sounds familiar but I can place her. Was she at camp?

    Comment by - the blogger formerly known as Lou | September 8, 2008 | Reply

  23. Also. I think Camp should be extended by a day or so. My daughter and I will be there for the entire camp next year.

    Comment by - the blogger formerly known as Lou | September 8, 2008 | Reply

  24. I think it’s great that friends that don’t have NF want to go to camp as well. I bet its going to be even better next year.

    Comment by Reggie Bibbs | September 8, 2008 | Reply

  25. Hey I will try to get here as much as I can. I have been busy answering tuns of emails. All from Camp For All.

    Comment by Reggie Bibbs | September 8, 2008 | Reply

  26. Yes, Lisa was at CAMP, she been attending all camps since 1995. I do not think she has missed a year since then. She is responsible for the plate signing each year by getting the plates.

    Comment by JohnP | September 8, 2008 | Reply

  27. oh, ok, is she a blonde woman?

    Comment by - the blogger formerly known as Lou | September 8, 2008 | Reply

  28. Lou I will try to send you a photo of Lisa Bold.

    Comment by Reggie Bibbs | September 8, 2008 | Reply

  29. What a great camp this year! I will see how we can extend next year, but can’t make promises. We had the best group ever and I enjoyed meeting the new people. I am glad that the Texas NF can offer this to everyone because it truly makes a difference. I really hope that everyone enjoyed the Wish Boat ceremony, as it was a emotional time for everyone, especially me and hope to continue that as a tradition going forward. Thank you to all of you.
    Please keep Lisa Bole in your prayers.

    Comment by Cindy Hahn | September 9, 2008 | Reply

  30. Up date on Lisa Bold. I just spoke to her on the phone. She seem to be doing ok. She said hello to everyone.

    Comment by Reggie Bibbs | September 9, 2008 | Reply

  31. Thanks for the update on Lisa.

    Comment by Cindy Hahn | September 9, 2008 | Reply

  32. She must really love camp to still come when you’re not feeling well.

    Comment by - the blogger formerly known as Lou | September 9, 2008 | Reply

  33. Yes she loves camp that much.

    Comment by Reggie Bibbs | September 9, 2008 | Reply

  34. Cindy I will call you or you can call me. I will give you Lisa’s phone number at the hospital.

    Comment by Reggie Bibbs | September 9, 2008 | Reply

  35. Thanks Reggie
    Just called–

    Comment by Cindy Hahn | September 10, 2008 | Reply

  36. Great Cindy. I’m sure was happy to hear your voice.

    Comment by Reggie Bibbs | September 10, 2008 | Reply

  37. Hey, Cindy, are you recovered from Camp yet? I know you worked your butt off and it showed (not your butt but the effort). When things go perfectly and seamless, nobody ever takes notice. It’s only when things mess up or don’t go right that you hear about things. Well, I’m happy to report that everybody I talked to had an incredible time! Sign me up for next year!

    Comment by - the blogger formerly known as Lou | September 10, 2008 | Reply

  38. I will start working on downloading my photos today, may take couple days to get it done since there are many. From the chat room on CTF.ORG, the ones that came, gave good reviews, and ones that did not come, want to come next year.

    Comment by JohnP | September 10, 2008 | Reply

  39. Wow! that is good to know.

    Comment by Reggie Bibbs | September 10, 2008 | Reply

  40. About half way done….taking a break

    Comment by JohnP | September 10, 2008 | Reply

  41. Glad Everybody had a good time

    Comment by Shelley | September 10, 2008 | Reply

  42. I am glad everyone had a great time.

    Comment by Cindy Hahn | September 10, 2008 | Reply

  43. I want to wish everyone well. IKE Is on his way. My Brother had to be moved to Dallas.

    Comment by Reggie Bibbs | September 11, 2008 | Reply

  44. John, what’s your Flickr account name?

    Comment by - the blogger formerly known as Lou | September 11, 2008 | Reply

  45. jptexphoto is what I go by.
    The photo are in 2008 Texas NF Family Camp and the
    Texas NF Foundation

    Comment by JohnP | September 11, 2008 | Reply

  46. John,

    Your photos from camp are great.

    Comment by Reggie Bibbs | September 11, 2008 | Reply

  47. Sure am glad the camp was last week instead of this weekend, looks like there going to be lots of rain in that area. I notice, if the trend continue of having camp, weekend after Labor Day, which will be 9/11-9/13, to do something red white and blue in remembrance of 9 11. I added some photos from Thursday night, night before camp when some of gather at Olive Garden in Irving. on flickr, search for 2008 TNF Campers Dinner.

    Comment by JohnP | September 12, 2008 | Reply

  48. Lou send me a email or call me.

    Comment by Reggie | September 12, 2008 | Reply


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