neurofibromatosis cafe

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


I am overwhelmed by the outpouring of support that I have received from the Fox News Broadcast. Thanks for your encouragement. My email box is overflowing with all of your kind words and thoughts and I am still answering every one of them. So I may be a little slow updating my blog so please bear with me. I really feel great about people being so open with me and explaining how they feel about the newscast, NF and me. It’s wonderful feeling normal! Thank you all so very, very much!


February 20, 2007 - Posted by | About Me, neurofibromatosis, News | , ,


  1. There are a lot of very good people out there. You have touched many souls!

    Comment by adgiant | February 20, 2007 | Reply

  2. Yes I have met a lot. And I know it will be a lot more. Now the ones that wanted to know and didn’t know it was ok with me to ASK, now know its ok to ASK. Just like I didn’t want to apporach and ask do you want to know ? Wow! We all have learned so much.

    Comment by Reggie | February 20, 2007 | Reply

  3. Reggie what an important lesson you’ve taught us that we can pass along to Elena. Just ask. If we ALL did that with each other the world would be a much better place.

    Comment by Rie | February 20, 2007 | Reply

  4. Dear Reggie,

    I have wondered what happened to you and how you were doing for many years.
    I remember you. I am 42 years old and went to Grissom Elementary from K-2nd, then family moved away.

    You had a profound effect on me, I did not have a class with you but remember you walking home and to school everyday as I and my siblings safely were carried in the back of a little red pickup truck by a parent. I remember thinking how brave you were, walking to and from school; which was scary for any small child, but how brave you must of been because I remember you always smiling and thinking, man, If he can find something to smile about, I better never cry.
    I remember you also getting teased by mean hateful children and I also remember that many stood up to those bullys on your behalf.
    I never teased anyone, directly because of you, and raised my children to be brave enough to stand up to the bullys of the world that make themselves feel bigger by picking on those less fortunate in life.

    As I sat watching the Fox news report, they were calling you Reggie but I remember Reginald. Is this a false memory or was that your real name?

    Thank you Reggie for instilling in me at an early age, that not everyone is the same and that is ok, too!!
    All my best to you,

    Comment by Debbie Frazer | February 20, 2007 | Reply

  5. Thank you. you have a great memory. My name is Reginald, it’s Reggie for short. Thank you for accepting me at that early age. I remember your name and I remember you lived just a hop skip and a jump from our house. We still live in the same house. I hope you hear from you again.

    Comment by Reggie | February 20, 2007 | Reply

  6. You might need an agent soon, you’re becoming even more popular. Just remember us little people when you make it big.

    Comment by Jorge | February 20, 2007 | Reply

  7. Have your people call my people. Please no pictures. LOL. Thank you Jorge the picture are Great! Email me direct, I have a message for you.

    Comment by Reggie | February 20, 2007 | Reply

  8. I was incredibly moved when I saw your story. Never let some ignorant fool’s reaction hurt you; you are amazingly strong and inspire me. I understand how people can act if you are somehow different whether it’s right out there in the open for their judgement, or even label you “different” or “worthless” bc. a certain unspeakable crime was committed against you!
    I know, having been tossed out of many friends’ lives bc. another one of their friends had date raped me! Above all, their(the two aquaintances of his who knew about it the whole time) responses to my asking to confront the young man (after years of repressing it all and trying to numb the pain through substance abuse) in person, were heart wrenching. One of my closest friends suddenly did not remember talking about it the many times we did, and gave a rash and hypocritical excuse for not wanting to be friends, joining in with his best friend(who had cleaned up all possible evidence) on insults such as how I was “tainted goods” and no one would believe me over them bc. of my “partying” reputation, calling me a “drug-addict” and “liar.” Funny how I wouldn’t touch alcohol before the incident, but within a week after this happened, I was drunk and soon searching for any way to numb the intense pain inside me. The thought of prosecuting terrified me: I was so embarrassed I only told a couple close girl friends, and couldn’t dream of putting my parents through the hell I was facing. I did not want to be publicly scrutinized.
    Sad thing is, even though I did finally manage to get the rapist’s number from those “friends”, my message to him was never answered, though I made it clear I simply wanted closure, knowing my chance at justice after a few years was impossible, w/ no report filed,
    as well as lack of evidence.
    Since a local officer and personal friend gave me the word on my possibilities, I have tried and tried to move on completely, and have been sober for very long now, having realised I was letting him indirectly hurt me more.
    I believe the answer for both you and me is simply that in the end, there is no question that WE are not the monsters; those who look down on or judge us, choosing ignorance over decency, and fear over truth. May God bless you, sir. I admire your boldness. You have inspired me to be braver and stronger. ALso, i believe you have inspired many others not to judge, laugh, or look down upon those who are different, but embrace them and throw ignorance to the wind.
    Best Regards, Terry Heard

    Comment by Terry Heard | February 21, 2007 | Reply

  9. I think it’s a little too late for “no pictures” with the Chronicle already wanting to book a photo shoot with you. “With great power comes, great responsibility,” Spiderman.

    Comment by Jorge | February 21, 2007 | Reply

  10. Terry, what an incredible story. I wish you well. Hang with us here!

    Comment by adgiant | February 21, 2007 | Reply

  11. Terry,

    I will stay in contact by direct email. We have kept in contact via email once or twice. Thank you Terry. Watch for my email

    Comment by Reggie | February 21, 2007 | Reply

  12. I wanted to thank you for being “our” voice. I too suffer from NF. I enjoyed your web-site.

    Comment by Liz | February 21, 2007 | Reply

  13. Liz, I want to thank you for the visit to my site. Please write me, let me know what you want to be heard. Give me your ideas that could make things better. You may have a few ideas no one else has though about. Stay tune Liz.

    Comment by Reggie | February 21, 2007 | Reply

  14. Hey Jorge, I think you are right. A little to late for no pictures. O well I guess somebody gotta do it. Why me ? Because ! I love it! Maybe Lou was right no living with him now.

    Comment by Reggie | February 21, 2007 | Reply

  15. Congrats Reggie!!

    Comment by Jason McElweenie | February 22, 2007 | Reply

  16. Thank you Jason. All the support from you and so many others are the reason the JUST ASK is working.

    Comment by Reggie | February 22, 2007 | Reply

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