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New Facebook Group – “Friends of Neurofibromatosis”

picture-1.pngTo All:

I have created a group on Facebook called “Friends of Neurofibromatosis.”

To those of you unfamiliar with Facebook, it is a FREE website that allows you to do a lot of things like post photos, videos, and friend links, much like MySpace, but with one very important difference. It allows members to form groups of like-minded people who share special interests and allow them to easily interact with each other.

I can’t think of a more perfect tool to use in building a community of people who are challenged by neurofibromatosis in one way or another than this. Whether you have NF, have a friend or family member with NF, or are just interested in helping people with NF, this is the website for you.

By becoming a member of this group, you will be able to connect with other people who share the same frustrations, burdens and pain of NF. You can pass along information that you think might be helpful to others. We can send time-sensitive newsletters to ALL group members with a click of a button when an important event or news item occurs.

Facebook will never replace this blog but it will provide us the means to meet new people, build awareness, share information, and, most importantly, help us build a community that helps provide comfort, education, distractions and support to all affected by NF.

Please check out the group at this link and if you can see the endless possibilities that this site provides, please join!

I thank you! —Lou

153 thoughts on “New Facebook Group – “Friends of Neurofibromatosis”

  1. I have been trying to set up but I am having a hard time setting up my password, I have the flu, I guess I should have waited until I was feeling better, when I feel this bad even simple things I seem to screw up, but I will get it straightten out

  2. I do wonder how many other ppl suffer from siezure disorder cause of nf. Having siezures really suck. I don’t have alot of cosmetic I have some cosmetic issues, I suffer from alot of “hidden” issue that are not noticiable at first glance but once you get to know me you think Damn Girl just get yourself a room at your local hospital

  3. Patricia, if you need any help with Facebook, let me know.When you click on the link, it should take you to a page that says “Join Group” or something similar on the right side of the screen. Click on that and it’s pretty self explanatory after that. Hope you feel better!

  4. thanks, Lou, right now I feel like my head is about to explode they gave my husband the same med. and he sleeps like a baby, not me, I am still awake.

  5. Well, at least your house isn’t haunted. Count your blessings!

  6. that is true, I have been told that somewhere in my sub, was an old Indian burial ground. But I have lived in my house for 8 years now, I think by now something would have happen if it was going too. However at work, there is an old inmate that comes around sometimes where there are no inmates so I have been told. They call him Sam.

  7. Comment 1. I have two nieces that have NF. You can’t tell the have it from a far. They have some of the spots. They use to have seizures because of NF. They may have been around 5 years old I think. They don’t have them now.

  8. hey Reggie its good to be back and not have pain

  9. but dont worry I still have some pains on my arm and one of my fingers and I think its NF related

  10. I used to wake up and see images walk around the house. They were transparent so you could see through them yet distinct enough to make out facial features and such. They never acknowledged my presence. Of course, when I saw them, I would freeze and close my eyes so they would go away. Can’t say for sure if they disappeared when I stopped looking but they were definitely there. I only saw them when I would fall asleep on the couch watching TV when I was living in my parents house during high school.

  11. How old were they when they had seizures I was 19 when I had my first one, I use to have them all the time in my 20s, I have not had one in about 9 years, I stay on my meds and barely drink. I do have trouble with meds from time to time and would like to give them up. but!!!!, I really got to be careful with what I take even a cold med. can really mess me up. but this is the life I have I can either cry and live a miserible life, or take life with what it gives me and hold my head up and be damned if I let anything hold me down, I refuse not to enjoy life one of my favorit saying is, “I refuse to tippy toe thru life just to arrive saftly at my death” I am going to enjoy every step of the way.

  12. Patricia, try joining the group now. I had done something stupid which prevented people outside the Houston network to join.

  13. I joined the houston network, I think it was me, I sent an email for a different pw, shit happens when you feel horrible and you dont wear your glasses no telling what I type in yesterday. LOL

  14. #14 Yeah, you actually said something nice about Reggie. Have you seen a doctor?

  15. Yes I did and was put on meds.

  16. That explains that.

  17. I have the flu, they gave me flu medicine

  18. Patricia I hope you feel better before the weekend is gone.

    My nieces had problems for a few years. They use to take and I’m not sure of the spelling. Something called Tegartale.

  19. HI there 3rd cup of coffee

  20. I use tegatal for a while too, then I went a while using nothing, not the wisest desiion I ever made. Sometimes the meds can be just as bad as the problem. oh well, I guess that is how it goes some times.

  21. has anyone else set up a facebook account

  22. Patricia I have had to take morphine I think that is how you spell it anyway it was the only med that made my really bad headaches go away and when i took it I could swear I saw things flying in my room on the ceiling around in circles

  23. yea, morphine made me had dreams, that I will not talk about I will not take it no more, Morphine is some bad stuff.

  24. Do you have any left?

  25. It was over 2 years ago, I threw it away!!!

  26. Yea right Lou. You threw it away.

  27. Brian did you get the invite to facebook?

  28. I don’t like being home sick the same time my husband is, we fight over the tv, I like Judge Alex and he does not, Judge Alex is the only one I like to watch and he is being a grouch about it.

  29. Have you considered divorce? Maybe you can get Judge Alex to take care of it for you. Kill two birds with one stone!

  30. I love my husband, he just drives me crazy, Judge Alex is just another preety guye on tv

  31. lol See You just can’t trust that Lou. Out of no where He stab you in the back. Lou have you ever thought about taking a shower with the radio in the bath tub with you. Maybe you should.

  32. no I dont think so Reggie what is facebook

  33. Facebook is a cool website. You can read all about it on this blog. We have a NF group to do what we do here and more.

  34. no I dont think I got the invite Reggie

  35. ok, I just click on the link found myself and poke myself that sounds kinda of nasty, I don’t really knows what that means “poke” that is why I poke myself I guess I’ll find out. πŸ˜€

  36. Oh, Reggie pokes himself all the time! It’s disgusting. Sometimes he’ll google himself too! Sick…

  37. hey Patricia how is Vanessa

  38. whats up Shelley

  39. she is doing ok, she is happy is having a boy, I am too, I never had a boy. The toys for boys are much cooler, 4 wheelers, trucks, hotwheels and such, I guess I was always more of a tomboy, at heart even now when I order a kids meal at Micky Ds I always get the boy toys. πŸ˜›

  40. comment 38. SHUT UP LOU! Google is your middle name.

  41. Everything ok Brian

  42. Reggie Lou wonders why he needs a baby look at comment 38

  43. so far ao good Shelley thanks for asking

  44. Shelley I am playing on ebay looking for certain John Deere toy tractors to add to my John Deere toy collection

  45. good one Shelley. Lou needs a straight jacket.

  46. Hey Reggie I learn from you on harrassing Lou

  47. I have a question Did yall adopt me or not

  48. I will be back. I’m helping someone to join our blog. Rich email me yesterday. You will see a post from him today I think. I will be back.

  49. answer comment 49 Yes we did.

  50. hey yall whats up

  51. Yo! Brian what’s up?

  52. not much Reggie feeling pretty good today how bout you buddy

  53. Reggie I am also playing on the computer looking at ebay

  54. I had to fix my sister’s computer. She is back online now. Find anything good on ebay?

  55. yeah a few things I am watching 2 items right now dont know if I will win either one but I am going to try to at least get one of them that I am watching

  56. Im back yall whats up Brian

  57. not much Shelley feeling pretty good today no pain how are you doing

  58. Good here thanx

  59. Guys what did yall get for your sweeties for Valentine’s day

  60. Now Reggie you and Brian yall flirt

  61. Reggie, You did not like “The NoteBook” I cried my eyes out. I took that test on facebook looks like we don’t have the same test in movies well some of the movies I really did not see I just kinda guessed. so maybe it is not all the true, but i did see “The NoteBook” and I cried. did you cry at all?

  62. I just guessed on all of the movies but two or three. I didn’t see the Note Book. So we can’t count that. Those test are hard. lol

  63. We do not flirt. lol. As Brian and I always say. Oh Lord it’s hard to be humble. We can’t wait to look in the mirror, because we get better looking each day.;) Right Brian? Check out the link and hear for yourself.

  64. yea, I guessed at the movies at the movies too. but I did ses “The NoteBook” it is diffently a chick flick it will make you cry, even the meanist of the meanist will cry a great love story.
    I see nothing wrong with flirting. neither you or Brian are married yall can flirt just make sure you don’t flirt with married woman that might result in getting you a$4 kick, but it is ok to flirt.

  65. lol. That is if you don’t keep it inconspicuously

  66. Hey Reggie,
    I’ll be arriving in Houston on the 15th of Feb. I’ll give you a buzz when I arrive. See you Soon!!!!!!
    Jerry T

  67. ok, last night we watch the patriot with mel gibson, lots of blood now we are watching king aurthor lots of blood again. what is it with men and bloody movies and fight seens.

  68. Patricia you feeling better ?

  69. yes, thanks for asking, now that I am feeling better I get to wash cloths and do house work, that stuff never goes away and just seems to wait for me to feel better LOL

  70. Hey Brian whats up you drinking coffee

  71. not much no Shelley I am not drinking coffee right now but speaking of coffee I got up and went to sonic this morning and got a route 44 coke and came home and my mom said she made coffee a whole pot and I did not know it I will probably drink some later

  72. Comment 69, Jerry I’m looking forward to seeing you.

  73. I was being BAD I drove my 4wheeler in the neighbor hood around block and up and down the street a few times, it is a beautiful day.

  74. watch out for the Police Patricia they dont like people doing that my neighbor got the police called on him for riding his on the street

  75. I know alot of my neighbors ARE the police one of my corner neighbor was washing his boat he just looked at me, I waved, and smiled, there are so many cops in my neighbor hood they call it “Cop Conroe” the real name is “Cape Conroe” but sometimes I just can’t help myself. lol one day we saw one guy getting a ticket and waiting on someone to come get him with a trailor they can bet quite the but heads but sometimes “it just gets real” LOL

  76. I think they need to have a place to ride you know they just dont have any thing where adults can have fun its just for kids they need to build a place with trails and things for atv’s if your not a kid its boring

  77. I was wondering if yall was being good or not Brian I know your an angel the rest I have no idea

  78. yep thats me Shelley but you are right I have no idea about the rest either

  79. there are but you have to pay, and you have to load up on a trailor, sometimes i just want to go go around the block like motocycles do. or something like that.

  80. just load it in the back of the truck I think its stupid that you have to pay to enjoy and have fun on a atv it should be free if you ask me

  81. so do I it is free in other states I took the safety course and I would pay for any tags if it would mean I could drive it leagal on the streat. ppl drive golf courts all the time they need to be ticketed too, espiecally theese little kids that drive all over the place

  82. I agree Patricia and you know what I ask myself sometimes is where are the police when you need them thats what I dont understand

  83. I know, but when I mess up there they are, but then I do get off whith a warning so I should not complain too much.

  84. yeah but then again they wont keep giving you a warning they will finally say enough is enough then they will whip out the ticket book on you

  85. Maybe I need to learn how to drive a bike maybe that might be about the same, my atv has a bike engine I have a kawasaki 650 brute force if I get a bike maybe the feeling will be the same. It would be the same engine. just a differen body.

  86. All I ask is Patricia is YOU be careful

  87. I am, I will be careful I just like to have fun

  88. Same here

  89. Where is Reggie and Lou

  90. hey ya’ll whats up

  91. hey ya’ll whats up

  92. Please read a message from a new friend that want to share his story. Let’s make him fell welcome.

    Hi my name is Rich

    i was told that i had nf when i was 29 . but i have had a reading problem all my life . i have gone to class for it as an adult. I have many cafe au lait spots and tumors. The tumors are mostly in the trunk area but as I have gotten older they are growing on my spine, legs, arms, face, neck and head — everywhere but the bottom of my feet. Lately some of them are growing and hurting a lot. I am going to look into possibly having some of the painful ones taken off. But, we will see. The nf has also pulled the tendons in my right foot so I now wear orthotics in my shoes. My right foot is 1-1/2 sizes smaller than my right foot now. This is also painful to be on my feet a lot.

    i have two daughters – one with nf and one does not have nf. i told myself that i would not let the school do to my kids what they did to me and just pass my kids on through school . i know how hard it has been for me to do the things i always want to do and it makes me mad. but i guess that is life and i still go on . You can still have a full life even with a disability. my wife is a big help to me and that means a lot to me .

    we were involved with a suppport group in oregon for nf . we have done a lot of fund raisers to raise money for research and we raised 1500 dollar and we put on a craft fair to help our local chapter.

    i like to help people that have a reading problem because i know how hard it is to read and do math and other things. I also know it is difficult to find where to get help and know who to contact. It helps me to help others better their lives if I can.

  93. Hi, there welcome I hope you will be in our blog, I also had 2 daughters, my oldest one did not have nf but died of ashma when she was only 11, my youngest one has nf and expecting her 1st child this June also what is your name, I rather call you by your name instead of hey you from oregan. Hope to see you around πŸ˜€

  94. OOPs sorry saw your name is Rich, Hi Rich

  95. Hi Rich welcome to the Blog I have NF and I know how you feel that it makes you mad and you cant do some of the things you want to do I want to be on the Fire Dept. so bad but cant since I am deaf and caused by a tumor

  96. HI Rich

  97. Everybody sleeping ?

  98. I am here Shelley I will probably be up till about 10 or 11 I am watching a item I bidded on on ebay

  99. Cool Brian

  100. I will be honest though Shelley I am getting pretty tired

  101. Hi everyone, Thank you for welcoming me to the blog. I just got home from work and am tired. I will visit the blog again soon.

  102. How cool. Thank you Rich. You are on my photo page too. When you go to my site click on photo tab and you can find your photo with my other friends.

    Ok Gang it’s 7:40am and I finishing my first cup of coffee and boy do I need it.

  103. OK, I am back at work, what the hell is wrong with some of theee ppl, how many times do I have to tell them? “I am not ITD, I just put in the request for your ppl to get access, if you do not know what you want to to have either do I” I bet if I were to use different language they would get it. I would probally get atleast 3 day off of work too. But I bet they would get it. I dont understand how some ppl can be so stupid and be allowed to make more money then me!!!! how is that possible???? How do they dress them selves in the mornings why must we have the same conversatoin day after day. If I were to talk to them the way I felt like I bet it would only take one talk. well enough venting thanks guyes I’ll talk to ya later and I will be nice. have a nice day

  104. Patricia,

    You are so cool. I love your attitude.You are serous funny and just a good person. Knowing that I hope your morning and afternoon will be great. I will be looking forward to more comments from you today.

  105. Yo Rich, How is it going today. Don’t let us scare you away. some time we just let off steam. All in fun of course. The email you sent me yesterday, would be nice to post. I know the others here would want to talk about that as well. I think it’s a good idea. I don’t know of a program you ask about. I think you are on to something.

  106. Hey yall Im here 3rd cup {Folgers}

  107. Folgers doesn’t count, Shelley.

  108. Folgers do count Lou πŸ˜›

  109. My Starbucks is gone

  110. Shelley don’t listen to Lou. No one else does. I’m drinking ice tea now.

  111. Reggie Did you see the pics of Lou I sent ya

  112. hi guys, I have bit my tongue off πŸ˜€ LOL I am better. monday mornings can just be a bit hetic sometimes, and Lou Folgers is coffee once you doctor it up it counts.
    Hey Rich I hope you ignore my firt post this morning usally I am nice in the morning I just had a very bad morning and needed to vent. please don’t let me scare you off.
    well it is after 3 woe hoe almost time to go home. hurry up and get here 5 o’clock I a ready today. It has been real. We want to see the pic of Lou, so please post? πŸ˜› later

  113. hey ya’ll whats up I am going to bed early tonight I ate 4 pancakes and am full and tired now I may be back if I dont fall asleep

  114. Yea I saw it Shelley. lol

  115. Cool Reggie Cool

  116. What pics of Lou?

  117. Hi everyone,
    I just got home from work and wanted to let you know I’m not being shy or ignoring you. I leave for work at 1:15 pm and get home about 10:30 pm that is why I am not on the blog then. And I sleep till about 9:30 or so in the morning. I will start checking in with all of you to see what’s going on when I get up.

    My wife wrote to Reggie about an idea she has about helping people with learning disabilities. That is what Reggie referred to earlier today about my email to him. Here is the email she sent:

    “Hi Reggie,

    It’s Cyndi . . . I was thinking last night about Rich’s reading tutor and his difficulties trying to explain his disabilities to her. She is a reading tutor that thinks she is just here to teach people to read that don’t know how. She can’t get her head around the fact that Rich just needs practice so he can get better at reading . . . she can’t totally “fix” him.

    This started me to thinking. Is there a program with the NF Foundation or chapters or ???? where people with NF who are not affected with LD’s volunteer as mentors and tutors to those with NF who have LDs? Who better to understand where the ones who suffer from reading/writing/math/etc. learning disabilities are coming from that others with NF?

    Just a thought that makes a lot of sense to me. I am interested in this program wheter it exists now or not. And, I would be interested in trying to get one off of the ground if it doesn’t excist. I do believe this is a great outreach for NF patients and one that should be offered if possible. Let me know if there is something out there now resembling this type of program or not — or just your general thoughts on this idea.

    Thanks. Hope you have having a Blessed Sunday. We’ll talk to you soon.


    Let me know what ya’ll think about this idea.

    Maybe some Saturday we can get a group of us together somewhere and have lunch or something.

    I’m going to go eat dinner now, talk to you later.

    Rich (typed by Cyndi so she could do the computer pasting stuff) LOL

  118. What a great idea, Rich & Cyndi! I’m not sure what type of qualifications you need to help someone with LDs but it’s definitely worth exploring. Maybe Reggie can contact Cindy Hahn at the Texas NF Foundation for her thoughts.

  119. hi grop
    i am up but i have not had my breckfut yust so i am going to have it i well stell be on ling ok

  120. Hi ya I had cheese cake already with my coffee for my birthday it was good, going to Carrabbas tonight.
    #121 That does sound like a good idea. but we would need some qualified ppl I would but that would be like the blind leading the blind. plus I don’t think everyone would understand me. cause of my speach I know what I am saying but not everyone else always knows what I am saying. I still like the thought of getting togather and having lunch and actully meeting each face to face. That would be neet.

  121. Hi Rich So good that you are here. Keep it up. I had my coffee this morning. Now I think I will have a glass of Ice tea.

  122. Patricia,

    It’s your Birthday? HAPPY BIRTHDAY! Cheese Cake Yum!

  123. I really think they should make today a “NATIONAL” holiday in honor of President Lincoln he was a great man I think everyone should write their congressman and request that make this day Feb. 12 a day to take off each and every year. I think that would be a great idea. πŸ˜€ πŸ˜› !!!!!!

  124. well i think the god or take to us to day bcose . becose it is raining her and it suck . we live in the south it is
    spose to sun shine not to rain

  125. Hey Y’all I didn’t have to go to Jury Duty after all. I called the County Clerk. I was told if I was disable I didn’t have to go. All I have to do is mail the summons and the letter saying I’m disable and that will take care of it.

  126. Rich it really look bad here. It is almost dark. It’s not raining ,but you can tell it will start soon.

  127. Same here in the crime-free Galleria area.

  128. well off to the sait mine . well take to you later have a nice day

  129. well it is getting colder, and I did not bring a jacket today, good thing I have a small car with a good heater, it does not take long for it to heat up but I do park aways from the door at work, it is about the only way I get exercise. I guess today when I leave I might jog a bit to get to my car instead of lolly gag to my car LOL. πŸ˜›

  130. That is what Lou does a lot. He lolly gag.

  131. hey Shelley I won the item I bidded on on ebay I got it yay

  132. woe hoe way to to Brian, What was it? πŸ˜€

  133. A Swedish maid outfit?

  134. HI Everybody Im here to harrass Lou

  135. Cool Brian cool Im happy

  136. Brian you drinking coffee or coke

  137. coke but I had starbucks earlier and Patricia it was a toy model John Deere Tractor I have a collection I have started of them I only collect John Deere and they are only for display they are not played with

  138. He guess what I’m eating? ok I will tell you. My sister just gave me a box of Peanut Butter Patties cookies. Girl Scots cookies of course. I will stop eating when they are all gone. I droped one on my key board. I said like we use to say when I was younger. God kissed it devil missed it. That mean its still good to eat. πŸ˜‰

  139. Lou you are telling off on yourself.

  140. I cant have cookies Reggie they have wheat and I am allergic to wheat so eat some for me

  141. Ok I will Brian. Sorry about that.

  142. Hey Everybody

  143. I like John Deere I think they’re cool looking, I did not know girl scout cookie are in wew hoe I need to get my money together.
    You know what my friend got me for my birtday….. a gift certificate to …”STARBUCKS” woe hoe and a real preety angel wind chime, and also on the way to town I notice they are putting a starbucks by my house on 105 woe hoe only thing I wished it was on the other side of the road it would be easier to stop, but cant have everything,

  144. hi trup
    well it look it is going to be a nice day . just up and had my breckef and go to school later . and come back and do hunedo . thin cook diner for the wift . well see you later

  145. Patricia I am restoring a 1948 John Deere tractor

  146. Cool Brian, my husband goes to tractor and truck supply and at Christmas time they John Deere Christmas Ornaments and all kind of cute stuff. Now that I am going to have a grandson I can buy the stuff.

  147. I have bought some of my toy tractors from Tractor supply company


  149. Happy Valentine Day !! Not sure about the Houston folks, but here in Dallas a cold front coming in this evening, expected highs to be in the 30s for Friday. Possibly winter mix, and rain.

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