neurofibromatosis cafe

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

Help Raise Awareness of NF with a “Just Ask” T-shirt!

3029582585_fd825f1112_bTHE SHIRTS SAY YOU CARE!!!

If you’d like to order your very own, “official” JUST ASK! t-shirt, just CLICK HERE!! T-shirts are available in adult small, medium, large, X-large, 2X-large and 3X-large. Cost is just $15 per shirt with all proceeds going toward increasing awareness of neurofibromatosis.

Just Ask Foundation – a 501c3 not-for-profit organization
Reggie’s Website
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MyStory-ReggieBibbs
MY FAVORITE PEOPLE IN THE WORLD!

48 Comments »

  1. Has anybody found this yet?

    Comment by Reggie Bibbs | May 20, 2007 | Reply

  2. Hi Jim. Photos i received. Thanks

    Comment by Bill Compton | June 4, 2007 | Reply

  3. Reggie,
    I was so glad to read your inspirational story. You have really turned a negative into a positive. My son was diagnosed with NF when he was about 9 months old. He has the cafe au lait spots, the freckles in his armpits and groin and the circumference of his head is larger than normal. He knows he has NF, but we never talk about it. I was glad to see you are sharing your story because it really helps other people. Thanks again, I really appreciate it. Keep Smiling!!!!!

    Comment by Tami T. | June 21, 2007 | Reply

  4. Hi Tami,

    I’m happy to get a nice letters like yours. This is what helps me. When I get letters from mom’s and dads telling me their stories, I can’t help but do What I’am doing on mysite. You should talk about NF to your Son and the rest of the family. That way you will not have to live in fear. We can over come. Lets keep fighting to find a cure.

    Comment by Reggie Bibbs | June 21, 2007 | Reply

  5. Hi Reggie. I am 23 years old and currently living in Japan. Today was the first time I had ever seen a woman with NF. I was getting ready to order food from McDonalds, and I noticed that the woman in front of me. From behind, I hadn’t there was nothing out of the ordinary, but I soon noticed her enlarged bottom lip and a bit of sagging to only one side of her face. It was very intriquing to me and I instantly became very interested to learn more. I was, as I’m sure most people are, too nervous to “just ask”, as well as ask in JAPANESE which is my SECOND language and I did not want anything to get lost in translation. Not knowing very much about these type of disorders, my first thought was that perhaps she had some form of facial elephantitus….? My first hit when typing this into google was an immediate NO. Apparently, doctors had misdiagnosed people with NF as elephantitus, but indeed they were mistaken. After I gained the vocabulary of Neuro….wait let me look up how to spell it one more time…NeuroFibroMatosis, I googled that and found your site. I am SO glad that I have “discovered” this little online treasure, and plan on checking in often to see what updates have been posted. I have already watched your video on Google, and would like to educate my more of friends on this fascinating, um, matosis….??? Hope to hear back from you soon and thank you for being you!!!

    One question. I see alot of women on television who are unhappy with the way they look and are completely transforming their faces with cosmetic surgery. How far can one go surgically if one has neurofibromitosis? How much can be done? And isn’t it dangerous when it comes down to involving surgical procedures and one’s face? What have been previous outcomes for those who have attempted it? Was it better had they just let it be? I was sort of thinking about this during my train ride home from the Mcdonalds today…..Thanks again. I’m SO curious!!!

    Comment by Naomi | July 26, 2007 | Reply

  6. Dear Friend,

    Thank you for taking time to write, and for viewing my website. NF is very complexed, and every person that has NF is not the same. In my case, I have had surgery and it helped. After years has gone by, my tumors has grown back. Maybe she did have NF. I can’t say. Sometime what helps to break the ice, you can give the person a smile. Then speak to them. You might want to say I know you are ask this question a lot. I know someone the has neurofibromatosis. I was wondering is this the same disorder? You can try that way. As for your medical questions I don’t have the answer to those. I have forwarded the questions to the approbate persons that can answer your questions. Again I thank you for your comment and visit to my site.

    Reggie

    Comment by Reggie Bibbs | July 26, 2007 | Reply

  7. Hi Reggie-

    My 5 year old son has NF1. He has had 3 surgeries already in his short life and is a wonderful, brave little boy. My son’s NF was a spontaneous mutation, and I had never heard of NF before he was diagnosed. My son’s tumors are along his neck and the bottom of his face. Early on we were quite concerned about the tumors along his airway, his airways seems better now, but the tumors along his neck (spinal area) have been causing lots of problems. I constantly am doing research looking for information on this disease and unfortunately, there is so little out there to help. I was extremly pleased to find your website and to read about the work you are doing for NF Awareness. I must admit, finding your site was bittersweet for me. Sweet because I am extremly happy and blessed to see that you are still persevering and it gives me hope for my son, but bitter because my son’s tumors have recently started to become disfiguring and I recently have noticed children (sometimes adults) who stare and make him feel uncomfortable. I have had many conversations with my husband, and we both agreed that people are curious and we should early on take the attention as an opportunity to teach people about NF and to teach our son to face his disease head on. When reading your story and seeing how disfiguring the tumors can really become, I honestly worry about being the type of mother that can truly teach my child how to deal with obstacles that he may face in the future. I continue to have faith that we will find a cure for this awful disease and most of all I know My God will never put more on me than I can bare, so I am up for the task of making sure my little boy is loved and taught how to stay positive no matter what comes his way. Well, I say all of this to say, do you have any shirts for little boys. I would love to get one for him and will order one for my husband and I. Thanks again for all you do and I will keep you in my prayers, please do the same for us.
    Keep up the wonderful work, it is so needed!!!!

    Comment by Erica | May 20, 2008 | Reply

  8. HI, I just found this site and I am glad to find somewhere with people who understand

    Comment by Alita | December 30, 2008 | Reply

  9. dear reggie let me tell you how proud i am for you becuase you do so many things for all nf patients forgive me about my english -i was born with a lot of cafe au lait spots when i was 13 years old i have the two first neyrinoma on my foot but we didnt know anything about nf when i was 17 i had a operation to the head because i had ydrocefalos tuna- from the time i was 13 until today 34 yars old i cant count the tunas on my body they are too many here in greece nobody do something for nf you are a hero i am very happy because i find your webside god with you

    Comment by VICKY | February 10, 2009 | Reply

  10. Reggie, I am watching a show on tv right now that you’re on, and you just said something that made me want to write to you. You said you just wanted people to be your friend. Well, I think anyone is lucky to have you as a friend. I’d call you friend ANY DAY! I wish more people were as genuine and sweet as you are. I think you’re pretty damn amazing!
    Michelle in Denver

    Comment by Michelle | October 10, 2010 | Reply

  11. Hello, Reggie,
    I just saw you on TLC and wanted to contact you. You touched my heart! I think you are very brave and extraordinarily sweet. I would like to be your friend. Your dog is so cute! I have 6 myself but they’re much smaller; Maltese, Shih Tzu, and 4 Chihuahuas!

    I will be praying for you and your mom. I hope everything works out for you. Keep the faith and don’t let this get you down. You are a wonderful gift and I wish you the best!

    Blessings,
    Angie
    Westfield, IN

    Comment by Angie Morgan | October 10, 2010 | Reply

  12. Hi Reggie. My name is Nicole and I just watched a documentary on TLC which featured yourself and Maurice. I just want to tell you that I think you are an absolute amazing person as well as others that suffer from your condition. You should never feel ashamed to walk out of your house. You are a beautiful person no matter what anyone thinks! Your courage is inspiring. I work in the healthcare field and I can promise I will spread awareness in the area I am in. Always keep your head up and be who you are!

    Comment by Nicole | October 10, 2010 | Reply

  13. I want to help people with nf. I would like to start a marathon or something to help raise money for people with nf that can not afford it. My goal is to get this done by the time i graduate from highschool which is one more school year after this one.

    Thanks,
    Dakota

    Comment by Dakota | October 10, 2010 | Reply

  14. Hi Reggie,
    I saw you on the Discovery Health channel on 11/28/10. You were very brave to face your fear of going out beyond your comfort zone. You are an inspiration to all of us.

    Comment by Judy | November 29, 2010 | Reply

  15. Hey Reggie,
    I saw you on Discovery Heath. It was really cool. I live in Houston too. You are very strong and brave. But remember this “God gives you a problem but, he also helps you with the problem.” God Bless!🙂
    Love, Sarah🙂

    Comment by Sarah | December 19, 2010 | Reply

  16. Hey Reggie,
    I saw you on Discovery Health Channel on December 19th 2010. I am very proud of you and when i watched this show it showed me how and what this country has come to. I cried. not because of how you look, because how you look is no different tan anyone else, i cried because i felt sorrow and the people that are scared of you and laugh at you are in the wrong, you should NOT be ashamed of yourself! you are a normal human being and i have lots of respect for you. What you have is a gift and things happen for a reason hun. I am proud of you, for being a very brave gentleman and no matter what you look on the outside you are a great individual on the inside and you should not care what people think or say about you, you can only please yourself. But there are people out there as you can see who are here for you and i hope this will grow and you will have a very happy life. Look at the glass as if its half full and not half empty. You are my hero,

    Sincerely,
    Ashley
    P.S. Lots OF Love

    Comment by Ashley | December 19, 2010 | Reply

  17. Hello Reggie,
    today, i saw your discovery channel special, and i was floored by your confidence and good spirit. your a very brave person to do what you have done, and the just ask website touched my heart. you are truly a role model in every sense of the phrase, and i look up to you as inspiration and faith. i wish you good luck in everything else to come.
    -Francesca
    P.S.- i would love to hear from you, and get to know you. feel free to contact me🙂

    Comment by Francesca Sandoval | February 13, 2011 | Reply

  18. Just watched you on Fit & Health. You are an inspiration. So glad you went to see your new friend in Utah (I forget his name; shame on me). Keep living, loving and smiling. Jesus in me loves you!!

    Terri

    Comment by Terri Loop | February 18, 2011 | Reply

  19. Wow, you are truly amazing. You should never let people take advantage of you & looks. They are missing out on what life truly means. Your an inspiration to the world. Please, don’t forget that. People will see you for who you are, but those who don’t matter don’t mind. Never give up for who you truly are ~

    Comment by Anonoymus | March 16, 2011 | Reply

  20. I was recently watching the story about ordinary people with the condition of nf. Let me let you know something you are a child of god and you just like someone who do not have your condition, live your life people can stare for days..let them.. just smile..god loves you and so do i. This world can be cruel and unjust when they see someone in the unusal state but god sees you as his child..and he wont ever give you more than you can bare..you CAN do it!..encourage yourself..what is meant to happen will happen..only is god allows..i love you!..n god bless you..from a 17 year old

    Comment by Tidreionna careabout | March 16, 2011 | Reply

  21. I just watched you on tlc today and i just had to find your website to tell you that i think your absolutely amazing, and that you should never let anyone get you down. You are a very brave man, and have a beautiful soul. You have made me realize i should love myself for who i am, and to never judge someone by the outside, but by the inside.
    You have touched my heart.
    sincerely,
    Brittany

    Comment by Brittany | March 17, 2011 | Reply

  22. Hi Reggie, I live in Houston, TX as well.. I saw your show on tv yesterday and want to congratulate your confidence and ability to get out and meet people and not be ashamed of your condition or be scared of what other may think anymore. I’d never heard of the disease or heard about anyone with it before so it came as a surprise to me. To think that there are people out there afraid to go out and experience the world because of NF is truly eye-opening. It makes you appreciate yourself and others around you. I would like to thank you for being so brave and going onto the show to share your story as it truly inspired me.

    Comment by Maddie Hawkins | March 17, 2011 | Reply

  23. Hey Reggy, I’m from Queensland, Australia. I just wanted to say good on ya mate, this website was a great idea. Everyone has to do the best with what they’ve got and my friend you have done a lot, keep up the good work!

    Comment by Leon | April 4, 2011 | Reply

  24. just watched the show called Medical Anomalies which was about Maurice and you on pay tv here in Australia. It sadens me that people are so nasty, although it made me feel uncomfortable seeing the effects of NF you both have earnt my respect I had never heard of it until now and as soon as I saw your just ask section I thought I would crongratulate you on taking the steps to educate people, it will not only help those with NF by giving them support, hopefully it will make it so that young people with it dont have to face the ridicule that you have had to endure ( even though there are still those that remain ignorant just like those that are racist). on a final note just remind yourself that you dont have the problem just because you have NF, they have a worse problem ignorance.

    Comment by chris thomson | April 4, 2011 | Reply

  25. “Gedday” Reggie..I am actually watching medical Anomolies as I write this. I admire your courage taking the huge step to meet Maurice. These people that stare and whisper..forget them mate live life to the fullest all credit to you. Excellent website. If you were in australia I’d be glad to consider you a “mate” All the best.

    Comment by Tony | April 5, 2011 | Reply

  26. Hey guys I just seen your story on foxtel (pay tv in Australia). And was blown away with your courage. Your what we call in austraila a bloody top bloke. I would like to buy one of your “just ask” T shirts and couldn’t fine anywhere on your web page. If you could help me buy one I would were it with pride. God bless from everyone down under.

    Comment by Brett | April 5, 2011 | Reply

  27. Hi Reggie – SO glad to see so many comments from people here in Australia.. my husband and I also watched your show on pay TV last night and we were so moved by yours and Maurice’s stories. I am devastated to hear of the taunting and suffering you have been through in your life, and agree that it speaks volumes more about the people making the comments. I am just blown away that people laugh and point?! We are trying so hard to bring our 2 little children up to appreciate that there is difference in this world on every level. And you and Maurice are living proof that the most incredible challenges make the most incredible people. You and Maurice are two of the most lovely, handsome people I have ever seen. If you come to Australia let us know. You have friends here already.

    Comment by Allie | April 5, 2011 | Reply

    • Yes, I’m also happy about it as well. It feel great to have friends from Australia. Guess what my friends in Australia? I love Australia. Reggie

      Comment by Reggie Bibbs | April 5, 2011 | Reply

  28. Just a follow-up to my last message reggie..if by any chance you ever come to australia let us know..we would be honored to have you stay with us .. even a visit would be great. Best Regards “MATE”🙂

    Comment by Tony | April 6, 2011 | Reply

  29. Hi Reggie

    My family and I watched your story and Maurice’s story on Medical Anomolies which screened on TV here in New Zealand over the weekend. You guys are such an inspiration to us, I take my hat off to you both. We loved the way you said ‘boo’ (or similar) to rude people who stare. We know too well what you must have gone through when you were children. Our youngest son is 11 and has NF1 and wishes he had the confidence to do that, his most noticeable issue is a disfuguring plexi on the left side of his face. We have an excellent plastic surgeon down here who has done several face lifts and debulking surgeries for him over the last couple of years. Unfortunately there has been significant nerve damage by both the tumour and the surgery, but he is looking quite good for now. He also turns away when strangers stare at him, he avoids even going to Macdonalds in case someone looks at him (usually it is over kids) it is heartbreaking to see, he wants to take on your positive attitude but it is difficult at his age. His new school he started this year has helped – they are very supportive of him, they explained his medical condition to all the other kids before he started which was a huge help for him – overcoming ignorance is a fantastic way to get over these hurdles and he has been accepted by all the kids there. Thank you both for sharing your story with the world. All the best to you both. Bronwyn

    Comment by Bronwyn | April 11, 2011 | Reply

  30. hi reggie

    I am alisha from India. I just watched your story on Medical Anomolies on discovery. You guys are really so brave to face this disease. You all are really an inspiration for all those who suffer from this disease.Though i have never seen anyone around here with such problem but still i can feel the pain of those people..!! You are really doing a great job and all the very best for your future
    ALISHA..!!

    Comment by Alisha Singh | May 26, 2011 | Reply

  31. hi reggie Im aaron from philippines I just saw you on discovery.and reggie

    Comment by aaron | May 27, 2011 | Reply

  32. hi reggie Im aaron from philippines I just saw you on discovery.and reggie Do you have a facebook

    Comment by aaron | May 27, 2011 | Reply

  33. u r a brave MAn😀

    Comment by tahir | June 1, 2011 | Reply

  34. hii Reggie, I had seen your story on discovery it is very inspiring, Im from India ,glad to see a man with so much will power .I hope to meet you one day. good luck and God Bless. Take care

    Comment by aakriti safri | July 2, 2011 | Reply

  35. hiiii reggie,am a student from india,i have seen your programe in discovery,,i couldn’t stop my pathetic feelings.so,sad ,but u have made it with a great positive thinking,unknowingly you achived alot,
    you became a celebrity figure in the world,

    Comment by tarun | July 11, 2011 | Reply

  36. hey friend ,
    great you are ,i saw you last nigth in dicovery channel
    you and ur friend both have great positive though & willpower ,that is not found in normal person you came on earth to represant that spirit ,
    me and my wife is very happy to see your confidance and spirit it directy belong to good by that you change all negetive to positicve i love you…..

    Comment by ravi saiwal | July 11, 2011 | Reply

  37. hiii reggie, am rajesh from India, i saw you last night in discovery and want to convey message to you we also learn from you how to leave life in positive way n how to face the world and i like most in your episode is your courage of facing the world and positive attitude towards life. Great gong brother

    Comment by Rajesh Mitharwal | July 11, 2011 | Reply

  38. Hello sir i saw you on Discovery channel and after that one hour i felt so so confident that i can’t put that into word’s.

    i really admire your courage and thank you for the awareness you are spreading through this campaign.

    I’m sure that there are many fan’s of yours out there but i am too is your fan know from INDIA………..

    Comment by sunil kumar | July 12, 2011 | Reply

  39. hi, riggie
    im marc form phil. i also have a NF, can you help me on how to hnadle on this, cause i dont know how. tnx just emel me cramemod@yahoo.com.au

    Comment by marc | July 18, 2011 | Reply

  40. Hi Raggie,
    how are you? I am from Kolkata, INDIA. I have seen you on Discovery chanel program. now I am interested about ‘nf’.
    pls you will send me latest nf resurch researsh information.
    Take care.
    yours Sadhan

    Comment by Sadhan Biswas | September 25, 2011 | Reply

  41. may ALLAH help you……

    Comment by sanam | July 27, 2012 | Reply

  42. Hi Reggie, I am grace from the Philippines I too have NF but doesn’t have any idea what NF type I do have. Although I reseerch several articles about NF yet I don’t get any medical advice. I hope you could help me to understand more about NF. Thanks a lot

    Comment by mary grace b. guillergan | January 14, 2013 | Reply

  43. Keep your head up🙂 my name is nichole..I dont have NF but I watched this show on tlc and really enjoyed it.thanks and god bless you:).

    Comment by nichole | March 24, 2014 | Reply

  44. Today i spent 300 dollars for platinium roulette system , i hope that i will make my
    first money online

    Comment by Franchesca | January 6, 2015 | Reply

  45. Hola Reggie; te escribo desde Argentina, vi en TV (discovery channel) un documental sobre N.F. y se me ocurrio la idea de estampar remeras para uso propio con logos de enfermedades poco conocidas, con el fin de crear conciencia. Me complaceria obtener el logo de la remera con el contorno de la cara. Lamento no poder escribirte en ingles, espero que la traducción sea entendible. Saludos cordiales y energia para seguir creciendo!!!

    Comment by Andrés | February 22, 2015 | Reply

  46. Hey Reggie my name is Ezra Jackson
    I must say you really Strong person
    I can inlet imagine its not easy for you growing up with NFC
    I just one to tell you that God is with you Reggie
    God will bless you
    Keep up the Good work

    Comment by Ezra | July 21, 2015 | Reply


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