Reggie’s Ad in This Week’s TIME Magazine
This ad is the one that ran! We decided to run this ad later.
Reggie felt that maybe people might be shocked by his actual photo in the ad so he requested that we change the ad to the visual on his shirt. What do you think? If you were a reader of TIME magazine and turned the page to see a visual of a man with a disfigurement, would you be repulsed or filled with compassion? Be honest.
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I would like to add also, I’m sure the photo will catch anyone by surprise that may not expect seeing someone with NF. Solution, Awareness, print ads TV spots. Talk about it more then ever. Just my thought. If anyone see the add please post here.
Bring it on bro!!!!
Michaelhetty, glad to see you here. Welcome to my blog. I will be visit your blog as well.
Hey Michael, welcome to the blog!
I think it’s hard to say for those of us that read the blog. Since we know Reggie’s spirit and appreciate his smile, the picture doesn’t shock us. I would like to see succesive ads, first the logo ad and then, a few pages later, Reggie’s smiling face.
Since I have NF, and my mother has NF it would be hard for me to say and it would be hard for me to ask my frineds cause they would kick someone’s a$$ for ever making fun of anyone with NF,
To answer your question, no matter where you go, there will always be a butthead that will not be nice but I believe that there is a lot of nice ppl out there that will be open minded and listen or read. We just need to ignore the ignorarant(spl) and help educate the ones that are willing to learn.
AMEN Patricia I agree 100% that is so TRUE
Thanks David for the comment. And welcome to the blog
I know Patricia would be fun to hang out with. Someone who speaks her mind.
Good Morning everyone.
true Reggie Patricia would be cool to hang out with and so would Shelley I really miss Emily I wish she would stop in and say hi good morning everybody
Think about the ad the same way you do about public appearances. Not everyone you walk past at a festival is prepared, just like your casual reader. It’s the unexpectedness (did I make that word up) that inspires people to “Just Ask.” And to want to learn more.
It’s the fact that Reggie is willing to put his own feelings at risk and himself out in public that inspires understanding and compassion, along with inspiring other NF-ers to get out of their homes and into the light.
And honestly, if I didn’t know Reggie and saw the ad with his actual picture, I would feel compassion and want to know more. The illustration works well, but I think the actual photo has more stopping power.
But then again, I’m an ad guy… so what do I know!
Hey Reggie… when is your trip overseas?
Matt I’m happy you ask. Well for one thing, it is hard for me to change how I feel. And I know all of us that have nf feel this way. But when I go out, I do feel a little nervous. So if you have nf and feel that way, then it’s ok. After I get out in the crowds and just get use to the water it gets quite comfortable. If I jump out of the water before I get use to it I would never know know how great things can be. I am putting my head on the block and things don’t always happen the way I want, but that is just the way it is. I have more people to say kind things then bad. I have the right to go anyplace I want that I pay for. If someone can’t stand to look at me, then guess who’s problem it is? Not mine. I’m having my fun.
Comment 13,First week in June 4th. I might come back with a French accent. Boy would that drive the ladies crazy.
comment 12, That is RIGHT! You know it is what it, IS. Everything and every one is not glamorous. Maybe not make the picture as big as the page. Maybe make a short story of one of the many faces of people with nf1.
What do you think Brian? People need to understand about nf2 as well. this blog is to help all of us. nf1 and nf2.
I agree Reggie
Comment6 David again thank you for being here. You made a very good point, and I do agree. I hope you will visit and keep sharing your comments.
#12
Matt, good insight and well said. Let me give you another perspective to think about. What if you were the publisher of TIME magazine. Would you have a different POV on the ad? Would you be concerned about shocking your readers when they turn the page? I’m really straddling the fence on this one. From Reggie’s POV, I say run the photo ad. From a mainstream media POV, I would be hesitant to run the photo ad. Well, at least, at first.
What does everybody else think?
#6
Patricia, do you think people are buttheads because they are basically mean or are they buttheads because they are ignorant and don’t know better? Do you think maybe they are afraid of what they don’t know and understand? Perhaps with education and awareness, they could change their attitude from perceived meaness to acceptance?
Hi David, welcome to the blog. Always good to hear a fresh voice and a fresh opinion. What part of the world do you live in? Do you have apparent signs of NF? If so, how do people who don’t know you react to you?
Hey Everybody
whats up Shelley whats going on how are you today
#20. I can see where MAYBE a publisher might balk, but I say send it anyway. Let them decide. Even push back a little for what you think makes the stronger ad if they are hesitant. The worst thing that can happen is that they say no (and if anyone is used to hearing “no” it’s Lou… cheap shot, but couldn’t resist). In that case, just run the caricature ad.
I’ve seen way more shocking pictures in both Time and Newsweek that don’t have NEARLY the amazing, positive message of hope and education that Reggie brings to the table.
#25. Not to mention, I think that is an AWESOME picture of Reggie. That smile says more than all of the words on the page can POSSIBLY say.
Im good here Brian fixing gto make me a cup of Starbucks
I know Reggie personally he is a hope and inspiration to us all, he is also an amazing friend!!!
#25 I agree. The photo can’t help but to make you smile and give you positive feelings. I will tell you that we did encounter some concern from the publication when we submitted the first ad. What do you do when they’re donating the ad space?
TBFKAL, I do not suffer from NF. I live in Queens, New York and have been following the blog for a while. Call me a lurker!
You are right Matt. What makes the story so amazing is to see how I use to be. Shy and afraid that someone may not like me. Now are times I feel so WHAT! It is not a sad story. Just look at the record. I’m enjoying life and I want people to see I’m happy and most people are more accepting and make things easy. There are some bumps in the road, but the good over takes them. Anyone else that has the disorder can enjoy also. When you have friends like we have on the blog, you can’t help but enjoy life.
Hey David. I was sitting here trying to figure out what TBFKAL meant until I realized, “Hey, that’s me!” I may be slow but definitely not stupid. Glad to have you aboard, David! How did you first hear about the blog? It’s really amazing to see how many people come here from all over the world. We have over 102,000 visitors from every major country that I know how to spell. I hope you can be a regular on the blog with us. I’m really getting tired of talking to Reggie all the time!!!
David in Queens New York, I’m happy you have been flowing the blog. That is Great to have friends that are not affected by the disorder to join in on the topic. It you have a website and want to share it please share. You can send me a direct email if you want.
Hi Peter,
Thank you and welcome to my blog. I hope you will visit ofter.
I hope you got my message on facebook. I will keep you posted on everything that happens. And of course you can check here too. Another way keep up.
man Shelley Starbucks sounds good right now but sadly I cant afford it right now so none for me right now
Having NF and knowing Reggie since the early 90s, it would not shock me. If I did not have NF or know Reggie, I might be. I think on later ads, maybe show some photos of other people, children, that is not so noticeable, showing the lighter side of NF, and maybe various other stages of NF. I have taken many photos of children and adults with NF at out family camp and other events. Maybe it can me a theme for the next camp “Just Ask” if it has not been decided.
man the blog was going really good earlier what happened did everybody fall asleep or what
Yea we have to keep in mind it’s about all who are affected with nf. Not just about Reggie. Thanks John.
The blog is going well I think. Just look back to see who is blogging. We have several new names.
yeah I admit its better today than it has been but all of the sudden its slowing down it was real busy earlier today
It’s ok. Let just blog when we can. And when the others get a chance they will blog and things will get better.
Brian, a lot of us are at work and can only post at certain times when we’re not busy.Believe me, if I didn’t have to work, I’d be here making Reggie’s life miserable.
LOL thats funny Lou but what I don’t understand is even people that are at work before my old computer crashed the blog was always busy even people that are at work were constantly sending comments but now I get a new computer and its like nobody sends the comments like they used to it just seems really slow
I think it’s your computer, Brian, Is it a PC?
I think so but its NOT my computer I try to keep up with the blog all day I always check every few minutes to see what comment has been made honestly I really think it has gotten alot slower than it used to be
Hey Everybody Im coffeeed out for the day Just wait yall Elena will have a boyfriend Lou can be sweet
hey Shelley I had starbucks today you made me want coffee
I had to leave, but I’m back. Off and on. What I miss?
welcome back Reggie
Oh, you were gone?
Thanks Brian
Comment 50. I think I will just have to take a drive.
#21 Sorry it has taken me so long been one heck of a day, for the most part I think ppl ignorant and just don’t know better, however there are mean ppl and no matter what we say or do they won’t change. they are just mean and that is all there is to it. And you got ppl that are scared and don’t know what NF is, they think well maybe it is contagious, or what ever, My mother married a man who also has NF, they both went into the SS office and was asked by a worker, “Are yall contagious?”, She was speaking out of ignorance, which is really sad, since NF really affacts so many ppl But there are times that I myself act like a butthead to ppl’s reaction, cause I am exausted from constantly having to explain to what I think should be common knowledge to even ppl in the medical feild.
true I agree and that is pretty sad Patricia
{{{{{{{{{{EVERYBODY}}}}}}}}}}}}}}}
thanks Shelley right back at ya
Comment 53 Some time I get I NEVER HEARD OF THAT! You can tell when some doesn’t get it. That is when I don’t go in to a lot of detail. If I can see that someone is listing I will talk, but if someone is just being as jerk I just leave it a lone. Example Someone I thought was being nice ask a few questions. What happen to your face. What a dumb way to ask. So I explained. Then I was ask, Do you have 3 eyes? After that I knew she wasn’t wanting to understand. I told her Why would you saw something like that? You know I don’t have 3 eyes. I almost said yes, I have 3 eyes. She wrote back and said I’m sorry. When I replied to her saying saying it was ok, She wrote back and said Well do you? it looks like you do.
True, there is good and evil, and there will always be, My mother always told me to pray for the ppl that made fun of me, and she always prayed for the ppl that were mean to her. She is truely an insperation. The good ppl will tell me I never see the bumps on your mother, she is a beautiful person, the mean ugly ppl tell me why does she not go get them taken off, My mother also tells me one day when we go to heaven we will have perfect bodies, and we won’t have this disease and I won’t talk funny anymore, ppl will be able to understand and I won’t have to repeat myself over and over again. She is a very amazing person.
Hi Patricia I agree with your mom one day when we all go to heaven we will not have this disease anymore and we will be free of all the pain we will be perfect and it will just be great
Thank you Brian, I’m happy you said that. I believe that with all my heart.
well its TRUE Reggie one day all the pain will be gone and hopefully they do find a cure for this disease
Morning guyes, I hope today goes better for me, I almost told a Director “Just do your job!”, but decided that would not be career enhancing and bit my tongue and pleading to do a little bit of investigating after having a crazy lady yelling at me telling me I did not do something, and she was totally off her rocker, I was able to figure out what the hell was going on, and the it was the Director that messed up, I get paid the least how fair is that, it was just crazy, then my daughters car broke down, I really felt like drinking but I have seizures if I drink too much, I really hope today goes better.
I hope today goes better for you to Patricia
Patricia, Try your best to not say anything. Maybe when that person cools off, they will be nice to you.
Hey everyone, sorry I havnt been around, you know how busy I am, lol.
Anyway, to answer the question in this post, I wouldnt be repulsed to see that photo, but I can see how it may be surprising or shocking to someone who doesnt understand NF. But, maybe if more people see the effects of NF on a person then they will be moved to help increase awareness!
Patricia I hope your day is going well. When you do have a crazy day, what do you do to relax? I ling to listen to music. depending on how I feel, I choose that type of music. It helps.
hey good to see you Emily I hope all is well with Elijah and the rest of your family also WE MISS YOU VERY MUCH hope to see you back again soon
Hi Emily We miss you, we need you to harrass Lou, I need a good laugh LOL, my way of relaxing.
Hi Emily I’m so happy to see you here. I do understand it must be very busy for you. Hope Elijah and the Baby are doing well.
About the article. I’m very happy that we have nice people that want to help with awareness of NF,It wouldn’t have happen with their kindness. A lot of our great people in Houston and surrounding areas will come to understand. WHAT IS NF?
Emily, get your butt back here!!! NOW!!!! (Do you like it when I use my outside voice?)
Brian where are you? What do you have up this summer? Your finally answer about going to came is NO? Just want to know if I should look for you? I’m really wanting to go again this year.
Im here Reggie and most likely no I will not be going to camp this year
Hopefully you will be able to make one of the events this year. It’s something to think about.
I might go to the camp but eating is going to probably be a problem as I cant have wheat and I am picky about what I eat also have you heard anything about a NF picnic this year
I haven’t heard about a picnic. I will ask about it.
Hey John P, Did you tell Brian about the photo you took of Dog Bail Bond office. I know he might want to see it.
yeah we need to some how get John P to share the picture I would love to see it and maybe get a copy of it but I would really like to see it
Brian if you want to see John’s photos you have to go to http://www.flickr.com Maybe you will have to type his
name. Then you should be able to view john’s photos. The one you want is there.
Brian its not working. I will try something else. I will be back.
Hello Everyone,
I saw this yesterday and wanted to respond, but a close family friend had a medical emergency, so here I am a day late and a dollar short.
I wanted to say … maybe it’s time that people SHOULD be shocked. NF 1 and 2 are so little known yet are more common than Musculo-Dystrophy and Cystic Fibrosis combined. They get the “press” and that’s why the powers that be take action.
If Reggie is brave enough to put himself out there, then I say TIME magazine readers SHOULD see!! I think curiosity as much as anything will take over and people will read. And your mission of awareness will be accomplished.
You know I was sitting in the optician’s with Victoria this afternoon and an older lady struck up a conversation with me … after a couple of prying questions, which I answered only briefly … she turned and said ou loud “she’s handicapped isn’t she??” I was so disgusted (I totally ignored the question) and so glad that Victoria didn’t hear her. My 7 yr old son did though and was very upset with the lady saying “how rude”.
Reggie, people like you are changing the world and the future for children like my Victoria and I applaud you.
TRUE Ruth very well said and its good to see you
Thank you Ruth. I saw this same comment on you tube. I feel blessed to do what I do. As with every job it can be tough at times, but all the wonderful results are the pay off. Plus I have support from others that are touched by nf. Because of my website I have met so many of you that have nf, and it really enriched my life. I just love it.
oh and Reggie tell John thanks for the picture of Dogs bail bond office it rocks
HI there
Comment 80, You are RIGHT! Ruth, Since when have anyone really worried about shocking photos in magazines? How do we decide what is shocking and what is not?
Brian all of John’s photos can be found on his flick account.
Hi Shelley. Do you know anyone that get TIME Magazine delivered to the home? You can see my ad.
No I dont
hey whats up my peoples
Hi Brian glad you are back tonight.
yeah but I probably wont be on to much longer its getting late and I am sure probably most of the other bloggers are probably getting ready to hit the hay also but I plan to be back tomorrow and again I really like the picture of Dogs bail bond office
oh hey Reggie do me a favor and tell your mom I said hi
Cool I will. And say hello to your mom.
I will Reggie well I am fixing to head to bed buddy but I will be back tomorrow have a good night and good night everybody
Reggie,
Great AD–
Thanks for all you do to create awareness for NF
Thank you Cindy. I’m happy to Help.
hey Reggie you still up buddy I cant sleep right now just thought I would pop in and see whats going on by the way its 12:18 right now I am also just checking something I am watching on ebay if your not up I will just catch you tomorrow be good buddy
yea I’m up
too much espresso I think.
LOL thats funny Reggie you need to stop drinking that stuff so late in the day it keeps you up and that is not good we need our sleep I am really tired but cant sleep at all right now but I am really really tired
yea I still have a lot of midnight oil left.
hey Reggie whats midnight oil I have never heard of midnight oil
Good morning to all,
Brian,
Burning the midnight oil is when you are staying up really late doing what ever your are doing. You have to have oil in the lame so there will be light to see what you are doing.
Reggie – Awesome on NF PR! I need to update our site to have an “in te media” button – just haven’t yet. I think seeing your smiling face makes this disorder “human” vs. seeing the drawing. When I 1st see the drawing it just makes me picture the elephant man in my head. And that’s not at all who you are – you are full of hope and happiness!! and that shows through in the real photo of yourself!
I get it now Reggie that makes a lot of sense but I just never heard the saying midnight oil
oh and Reggie I love the picture of Dog’s bail bond office so much and am such a huge Dog fan I downloaded the picture to my computer and its now on my screen saver
I think the difference between the two ads tells us that we have a ways to go in creating awareness and acceptance of neurofibromatosis.
Susan,
The three magazines are giving the full page ads, and they were a little concerned about what photo to use. They ask if we could use another version of my photo. So we gave them the true drawing of my face. The ad will tell the story and people will know That the drawing is a man that happens to have Neurofibromatosis.
Reggie I would still like to find the magazines with your ads I really want to see it and I would really like one autographed
Hey Reggie, ever hear from the Neville brother that you gave your card to? If not, I’d like to get Lou (or you) to get nice prints made of the photos so that we can send them and see if we can get them autographed. Maybe multiple copies, as Reggie suggested, to use as auction items.
Here’s my suggested approach::
I think it would be so cool to send THEM each a copy of the picture with YOUR autograph, asking that they sign copies and return them for use as auction items.
Thoughts anyone?
Matt terrific idea. I will get the photo paper today. what size should I get.
Oh Matt, to answer your question. I haven’t from the Neville brothers.
I would do them as 8x10s. Are you planning on printing them off of a home printer? If so, you may want to consider having them done professionally. Laser or inkjet photo prints look great at first, but fade over time. You need prints that will live forever if we are getting autographs and such.
Ask Lou about it. If he doesn’t know for sure, someone at his office will.
Heard from him lately? I didn’t go to PJs last night, so I didn’t see him.
I’m glad you told me about the photo.I will ask Lou. I didn’t that about printing photos at home. I have a brothers printer MFC-465CN. I’m sure Lou can tell me.
Yea I heard from Lou. He is really busy today. He will probably write later.
Cool. I figure if you are thinking of auction items, we should get some nice prints done that won’t fade over time.
Matt Lou is going to take care of the printing. I think we are on to something.
whats up everybody how is everybody today
Yo! Brian whats up!
not to much here Reggie just kind of tired watching a little TV but I might lay down for a little bit and I might just hit the hay early tonight I think me and you kind of blogged late last night and I got another John Deere toy on ebay to add to my collection
Yea I’m tired as well. after going to bed around 2:00am and getting up at 6:30am is not very much sleep.
True Reggie I think you need to cut back on your espresso you drink it to late in the day and it just keeps you up I think you ought to hit the hay early today also and catch up on your sleep
Great news on the photos. I have both calls/emails in to the management company for the Nevilles and will let you know the minute I hear anything. I still say we should send each of them a copy with your autograph.
Think we can put that together by early next week? Maybe the combo of getting pictures and getting calls and emails will bring it to their attention.
Let’s do it. I will talk to Lou this weekend and I’m sure we can get that taken care of. What do you think Lou?
Hey there Everybody Im home
I thought Lou didnt work I thought he harrasses ladies at the office on comment 114
113 Hey Matt I will get some nice glossies of the neville photos so they can dign them. Maybe 4 sets? Maybe I’;ll print out a few of your girlfriend too.
Lou, have you been lurking in our hedges with your camera again?
Now that was bad. Well at least he can say he has one.
Maybe.
Are you on your Blackberry outside in the bushes right now?
About to head to John’s house and maybe play a little music.
Will see William there, so maybe we’ll log on from there and harass you further.
If we don’t see you all later, have a great night everyone!
Matt say hello to John and William for me. I may be here later. I will listen for any messages. I think I will read and that will help me to relax. Or I could read some of the stuff that Lou wrote. That will put me to sleep.
Hey Reggie, I’m up a little late. Probably going to ht the hay after this. Played some great music tonight. We’ll have to get together and do it again soon.
Have a great night!
Hey Matt, That sounds good to me. We will have to do that. I love music. Just wish I could play something. There are a lot of ideas floating around in my head, and I know that may scare some people, but it has to do with music playing,and awareness which is part of my campaign.
Music is all about making noise and I KNOW you can do that. We can give you a drum to pound on, anything just to take part and have fun. Be sure to ask William about his autoharp. That’s an instrument you might be able to pick up real quick.
Great! I think we are suppose to meet up today. I would love the learn that.
Hopefully he will bring it. You should email him and remind him to bring it. I know it needs to be tuned and is a real pain to do, so he may not have done that yet.
Hopefully, I will catch up with you guys later.
Reggie , Its great about your ad for NF and what you are doing for NF and people with NF . Cause When I firsy saw you when we were both at Goodwill , I was kinda afraid to talk to you but once I did you were just another friendly normal human being who has become a good friend..
hey everybody whats up I hope everybody is having a good day
Thank you Tim. I’m sure it time to get use to something we don’t understand.
Hey Everybody Im here
hey Shelley whats up
Not too much Brian
Where is Skippy to the Lou
hey whats up good morning everybody
Good afternoon everyone. Look for updates today and a new blog. Lots of things to look forward to.
Reggie,
I must say how blown away I am by your courage in talking about NF. I was reading my Newsweek magazine last night in the tub and was immediately drawn to your ad! I thought it was so cool to have someone in Houston featured in the magazine, but even more so once I read about you and your desire to inform people about NF with your t-shirts. I feel like this campaign must be so empowering for you and you can bet I’ll be a proud wearer of the shirt I just bought! If you are ever around the Spring area, please know you’ll have another “friend” here waiting to shake your hand and tell you way to go!
Keep up the good work and best of luck in all you are doing to spread the word about NF!
Hi Susan,
Comment 147
Thank to for your comment. I would be happy to meet you and would love to have a picture of you wearing my shirt. You shirt is on the way.