neurofibromatosis cafe

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

PLEASE HELP ME & THE TEXAS NF FOUNDATION SET-UP HOUSTON NF SUPPORT GROUPS AND EVENTS

logo.jpgDear friends, while I was up in Dallas last week helping with the Denise Terrill Golf Classic benefitting NF, I got to talking with a few members of the Texas NF Foundation and we think it’s time that Houston had their own NF support group again.

Back in the 90’s, the Texas NF Foundation actually had an office here in Houston to help those in the area afficted by NF to get the medical help they needed. And just as important. support in their daily lives.

During this period, I was honored to serve as manager of the Houston office until it became necessary to close the office due to financial concerns. As you all know, many non-profits never recovered after the ENRON and stock market problems of a few years back.

With that said, I would like to help the Texas NF Foundation get back into Houston by showing there is a need for their services. We have one of the finest NF clinics in the country right here at MD Anderson Cancer Center. It seems only right that we have representation in Houston for all those living here needing help.

In the old days, we used to have a lot of NF-related events happening in Houston to raise money, provide support and to just have fun!

If you were involved with the Texas NF Foundation in the past and have not been active for awhile, PLEASE COME BACK!!! WE NEED YOU NOW MORE THAN EVER!!!

I would like to hear from Mom’s and Dad’s and anyone that is affected with NF. You may not have NF but just want to help, and you would be more then welcome. Please respond to my blog and leave me your contact information. Together, we can make a difference in the live of those affected by NF!

If you are uncomfortable leaving your information on the blog, please email me directly at reggie@reggiebibbs.com. I thank you!

October 28, 2007 - Posted by | Benefit, Favorite Places, Friend, Friends, Friends of NF | , , , ,

58 Comments »

  1. Yes, I remember that there was a office in Houston and you were there. That was under the director of Bob Hopkins. There are many families that are from the Houston area, and which come to our family camp each year. As well with ENRON, stock market and many people being affecting with down sizing and jobs being out source even here in Dallas, donations have been down somewhat. I even think we even had a focal point or contact in San Antonio as well, but that is no longer. Texas is a big state, even a contact point in West Texas (El Paso and Amarillo), there are many people there with NF that do not know there is an office in Texas.

    Comment by John P | October 28, 2007 | Reply

  2. Yes I remember those days. We don’t have very many events in Houston. Maybe if we get enough friends and families involved will lead to more things happing in Houston.

    Comment by Reggie Bibbs | October 29, 2007 | Reply

  3. You can put me on your list, Reggie.

    Lou Congelio
    lou@stanandlou.com
    713-683-8000

    Do you need any other information or will this work? I guess email would be the quickest, cheapest way of getting in touch with everyone.

    Comment by adgiant | October 29, 2007 | Reply

  4. This will Work, but you may feel better about sending me an email titled add me to your mailing list.

    Comment by Reggie Bibbs | October 29, 2007 | Reply

  5. I have just finished my commitment at work, every year during the months of Sep and Oct. we have what we call the SECC, State Employee Charitiable Campaign, so I am free, only thing with the state in order for a chartiy to be chosen to donate to, they have to be on the “APPROVED LIST”, unfourtunally there is not anything for nf on “the List” so I was not able to nominate nf to get any monies again, I would like to get nf on “The List”, we raised over $6000 this year, I am not all that good at organizing, but I am good at doing, so count me,

    Comment by Patricia | October 29, 2007 | Reply

  6. Sounds good to me. I should add anyone that would like help I know there is a place for them. You can still get involved if you don’t have NF.

    Comment by Reggie Bibbs | October 29, 2007 | Reply

  7. Cool Reggie

    Comment by Shelley | October 29, 2007 | Reply

  8. Ok keep an eye out for surprises.

    Comment by Reggie Bibbs | October 29, 2007 | Reply

  9. What kind of events are we talking about? Bake Sales? Cook-Offs? Contact different clubs, bikers, vetts, 4 wheelers, jeeps, have runs? Will we take turns on location, like North side, Southside, ect.? Would we be able to get news coverage? You know famous people, you think they would make apperance. My mind is racing, I really enjoy this kind of stuff,

    Comment by Patricia | October 29, 2007 | Reply

  10. All those events have been talked about. Don’t forget about a craw fish boil. I need to build a list such as a contact list so that we can make sure the ideas you just mention get to the right people so that they will know we want events here. I’m sure the events could be in any area that will be willing to work with us so that we can keep expense down. You would a big help. I know you wouldn’t mind getting involved.

    Comment by Reggie Bibbs | October 29, 2007 | Reply

  11. Shelley and Patricia sorry to change the subject but I just wanted to let you know about my grandma she passed away last night

    Comment by Brian | October 29, 2007 | Reply

  12. Brian Im so sorry to hear that

    Comment by Shelley | October 29, 2007 | Reply

  13. thanks Shelley but she is not in any more pain and she is not suffering anymore but I miss her dearly

    Comment by Brian | October 29, 2007 | Reply

  14. The last time Dallas did the Crawfish Fest was in 2002. That took alot of work and expense to put that together. There are licenses to get (to sell beer), libility insurance, security issues, etc. In the early days, I think we did events like all you can eat pizzas, with portion of the proceeds to NF. I think there should be events where the average person can come to. Some of the events that they do in Dallas, such as Dining Out in Dallas starting at $125.00/person are out of reach for most NF families to attend. I have attended those (I go as a volunteer/photographer). I see a few NF people there that can pay to come. I guess to get the big bucks, have to do that. But I also think smaller events (not where it cost alot) for the average person to attend and support our cause.

    Comment by John P | October 29, 2007 | Reply

  15. Yes I’m sure it’s a lot of work in that. And the foundation must approve every event. These are only ideas of things I hope to have at some point. I like the pizza idea.

    Comment by Reggie Bibbs | October 29, 2007 | Reply

  16. When we had the Pizza thing, there were also raffles (like the Tennis and Golf), there were a entertainer of some sort that came (like a clown for the kids and I think some one did magic tricks, etc. I remember with Bob and when Marthra wa with us, there was a pool and dart tournament we did. Like on a Friday or Saturday nite, there were plenty of people there.

    Comment by John P | October 29, 2007 | Reply

  17. I hope everyone is reading your comments. Terrific ideas. You are brain storming. All of this sound like something we can have a lot of fun doing in Houston. I hope at some point we can get someone really famous to attend an event. We will just have to work an event around the schedules of who ever we can get to come. I might be able to help with that.

    Comment by Reggie Bibbs | October 30, 2007 | Reply

  18. Maybe we can include an event that involves drinking.

    Comment by adgiant | October 30, 2007 | Reply

  19. Brian, I am so sorry for your lost, I will keep you and your family in my prayes and if there is anything I can do let me know.

    Comment by Patricia | October 30, 2007 | Reply

  20. For comment 18 to adgiant. Are you suggestion something to do with water and t-shirts? Well I would hope NOT! mR. Adgaint.

    Comment by Reggie Bibbs | October 30, 2007 | Reply

  21. thanks Patricia I will I miss her dearly but she is not suffering she is in heaven being greatly taken care of

    Comment by Brian | October 30, 2007 | Reply

  22. Amen Brian

    Comment by Shelley | October 30, 2007 | Reply

  23. whats up Shelley how are you

    Comment by Brian | October 30, 2007 | Reply

  24. Been enjoying the pretty weather Brian and drinking coffee Im fine

    Comment by Shelley | October 30, 2007 | Reply

  25. Yes, Brian she is in a far better place then where we are, knowing that give comfort to family members, I lost a daughter Thanksgiving in 1995, she was only 11, I know she is Heaven, she use to ask me, “Momma, can we slide down rainbows in Heaven?, and Can you jump from one cloud to the next like jumping on beds?” I know she is in Heaven and I will see her again one day just like you will see your Gramma one day, God Bless and my prayes will stay with you and your family.

    Comment by Patricia | October 30, 2007 | Reply

  26. Hello…… Is there anybody out there………

    Comment by Patricia | October 31, 2007 | Reply

  27. Hello Patricia,

    I’m here. I have been playing taxi for everyone. I’m here for now. Then I have to leave then after that, I will be here for the rest of the evening.

    Comment by Reggie Bibbs | October 31, 2007 | Reply

  28. Hi Everybody HAPPY HALLOWEEN

    Comment by Shelley | October 31, 2007 | Reply

  29. Happy Halloween Shelley and Patricia I am so terribly sorry you lost your Daughter that has to be really hard and I am truely sorry but you are right we will see them again one day my thoghts and prayers are with you

    Comment by Brian | October 31, 2007 | Reply

  30. Thank you Brian

    Happy Halloween to everybody, just finished passing out candy, sat out next door w/the neighbor, their little girl passed my candy out, she was so cute, I had some Hot Tamales, my favorite candy, she would ask them if they like hot before she would give them out, she was just too cute, I love kids, they are just so precious and innocent. I hope everybody had a good Halloween.

    Comment by Patricia | October 31, 2007 | Reply

  31. I passed out candy too only had a small bowl it ran out

    Comment by Shelley | October 31, 2007 | Reply

  32. thats funny Shelley we had more trick or treaters than we did last year but it seems like there is a lot less of them than there used to be when I was a kid

    Comment by Brian | October 31, 2007 | Reply

  33. I took my daughter trick or treating. She got candy, I got beer. I’m on a sugar buzz right now. Leave me alone!!!

    Comment by adgiant | October 31, 2007 | Reply

  34. whats up Lou did you have fun

    Comment by Brian | October 31, 2007 | Reply

  35. Adgiant, You don’t need sugar. Please no more sugar.

    Comment by Reggie Bibbs | November 1, 2007 | Reply

  36. Lou, where do you trick or treat, I never got beer when I went trick or treating, I just got candy, I am never in the right place, oh well lucky you, lol

    Comment by Patricia | November 1, 2007 | Reply

  37. Oh he goes where he took me for my birthday. lol

    Comment by Reggie Bibbs | November 1, 2007 | Reply

  38. Would you like to know where I took Reggie for his birthday!

    Comment by adgiant | November 1, 2007 | Reply

  39. Shut up! Lou! Remember it was a surprise.

    Comment by Reggie Bibbs | November 1, 2007 | Reply

  40. Lou you dont need beer

    Comment by Shelley | November 1, 2007 | Reply

  41. to #38 I am afraid to ask!!!!! lol

    Comment by Patricia | November 1, 2007 | Reply

  42. Lou you do NEED a babysitter

    Comment by Shelley | November 1, 2007 | Reply

  43. hey yall sorry to get of track here a little bit but just to let yall all know I am having another surgery on the 7th of this month

    Comment by Brian | November 1, 2007 | Reply

  44. Prayers will be with you and for your doctors. I saw my neurologist today. Will be having a MRI soon, I requested it before year end before my new insurance kicks in ( will cost me more to have one then)

    Comment by JohnP | November 1, 2007 | Reply

  45. Hey Brian whats up

    Comment by Shelley | November 1, 2007 | Reply

  46. not much Shelley whats going on I am just getting ready to have another surgery but I will be ok just keep drinking coffee for me LOL

    Comment by Brian | November 1, 2007 | Reply

  47. oh Shelley I may get me a dog tommorrow she is really cute I may be adopting her from the animal shelter by my house

    Comment by Brian | November 1, 2007 | Reply

  48. That’s where I met my first wife. No snide comments please.

    Comment by adgiant | November 2, 2007 | Reply

  49. Brian my prayes will be with and the doctors for your upcoming surgery, and good luck on getting a dog, they really do make good friends, and they keep all of your secrets
    John I hope you mri goes well, and everything comes out good, the second to last time I had a mri, I fell asleep in the machine, the last time, i had my arms above my head, very uncomfortable, did not go to sleep that time
    Living with NF can really be a drag, I pray one day that there will be a cure or just be able to slow it down, there is so much more then just the cosmetic, if we can just get the message out to more people, that nf is a serious disease,it is not just about the cosmetic, but the tumors that grow on nerve endings, the speech imparments, the hearing and I could go on, but you all already know, we really need to work on getting NF education out to the public I am so tired of living in pain, I would not wish pain on anybody, espcially pain that will always be there. I hope one day there will be answers.

    Comment by Patricia | November 2, 2007 | Reply

  50. Oh cool on the dog Brian

    Comment by Shelley | November 2, 2007 | Reply

  51. Hows the irish coffee Lou

    Comment by Shelley | November 2, 2007 | Reply

  52. Brian Im drinking a whole pot of Folgers just for you

    Comment by Shelley | November 2, 2007 | Reply

  53. well Shelley we went and looked at the dog this morning and I did not get her my mom and my friend at the shelter want me to wait because we are trying to find a boxer puppy

    Comment by Brian | November 2, 2007 | Reply

  54. cool Shelley but I can only drink one or maybe 2 cups I could never drink a whole pot although I think I did one time

    Comment by Brian | November 2, 2007 | Reply

  55. LOL Now We are buddys

    Comment by Shelley | November 2, 2007 | Reply

  56. Hey Reggie, saw you got a new office. Looks wicked cool! Would love for you to work more with us. Being from Houston myself, I will not give up on reaching more patients. My goal is to have a “Friends of Children with NF” chapter opened there by end of February 09. This would be a great way to organize our efforts and goals and begin to work closer with our main office. So everyone, please keep in touch with either myself or Reggie, we will have a lot of work to do. Also see our new blog: texasnf.org/blog

    Comment by Susan | November 23, 2008 | Reply

  57. Susan that is great to know the Texas nf foundation has a blog as well. I will be sure to check it out. The office space is really cool. I don’t have any distractions there. Flexable hours. When I get done with everything I need to do I can go home. And it there is anything else I can do at home.

    Comment by Reggie Bibbs | November 23, 2008 | Reply


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