Jump On The Bandwagon EVERYONE
 

I just finished sending Larry King and CNN and e-mail expressing my extreme dissapointment at the fact that RSD was not even mentioned on the Heroes segment. Not to diminish Mackenzie Bearup (the teenage girl) but I stated that if she had Cancer,M S , Muscular Dystrophy Etc that if would have been mentioned. I asked them if this omission was done on purpose and to please respond back to me. I am still so angry at this missed opportunity to raise awareness that I could scream.

I am asking everyone on this site to also send e-mails to CNN.
Fondly-Carol

I'm with you if RSD was supposed to be dealt with,with the teenager. Do you have the email address's to CNN or any one else we could contact. I know I had an interview with the Tampa paper, and they did a great job. But how many people would have seen if rsdsa did not mention it. They even showed the gross pictures on the front page of one of the major sections. I'll help you in any way I can , please don't hesitate to ask me, I've had this crap since 1986 and been thru almost everything.I'm willing to do what ever you need me to do. Wendy

This goes right along with my post from this morning...I blasted off a message early this morning....along with like 77 of my friends..Larry is having a busy day!!! Please follow suite everyone.. I am warming up the bus as we speak!!!! He thought Tiger was a good interview wait til we fill his studio!!!!

Kathy:grouphug:

Yes i saw your post!
I just went to cnn.com and looked around untill I found a site to send an e-mail. Couldnt tell you exactly where it was but think I under Larry Larry King . Hope this helps.
Fondly-carol

P S keep a spot for me on that bus!!!!!

We won't pull away without you, !!!!

k:hug:

Please keep me in mind for that bus, this is a very importaant issue, We may have to bombard him with emails and maybe just show up! I like Tiger but it took up too much of his show when he had already scheduled the 2 others to come on and talk. This show was a joke if you were watching it for the RSD portion. I still don't understand how the rsdsa knew that there was going to be a section on RSD, someone had to tell them! Anyone know? looking for answers! Wendy

I was watching Larry king that night but after so much Tiger I just turned it off and gave up. I'm sending him an email too. If he had it he would think about spreading the word and praying for a cure. I'm on the bus!

abrown... You have a comfy seat right up front!!! Wonderful..we are going to have a great trip..Poor Larry..he's going to wish he was talking with Tiger again once we all get there..

hugz, kathy:grouphug:

http://www.cnn.com/2010/LIVING/04/08...ex.html?hpt=C1

~ Sandra

The Bearup family have been offered an episode on home makeover edition (TV show) as well, for teens who do charity work :)

CNN Hero
 

It seems you guys have gotten the wrong idea. The Larry King segment was always going to be a 1 minute introduction of the CNN Hero of the week, my daughter Mackenzie. She has lived with RSD for 6 years and found reading to be the only way to get her mind off her constant pain. This lead to her starting a book drive to provide books to other kids who live with different kinds of pain (emotional pain, fears etc.). The longer version of Mackenzies "hero" segment fan off and on all day Fri. and Sat.
This was never going to be a story about RSD. They did however film interviews with her Dr. and film her in a HBOT chamber etc. and have an extra piece on the CNN/heroes website and look for the extra.


They may do some follow up stories on Mackenzie. As far as the Extreme Makeover doing a story. Trust me we would not qualify.

Hope this clears up any confusion.

Thanks for pointing this out but I feel they should have pulled their 1 minute segment full circle and take 0.1 sec and say what MacKenzies's chronic illness is..Way too often RSD gets shoved under the rug..lacking noteriey it/we deserve...ultimately lacking in support and knowledge... I feel this segment left JQ public scratching their heads saying..so whats wrong with her.. ???? They filmed the painful injection but why??? We had a blip of time to make mention of RSD and we didn't get it.. Until one lives with our ugly 4 headed monster they have NO idea what it is like.. Thank goodness MacKenzie is mobile and looks health, many of us are not as lucky and if they can walk it is not a pretty walk not hold their upper body up without pain..



Kathy

[QUOTE=keep smilin;643416]Thanks for pointing this out but I feel they should have pulled their 1 minute segment full circle and take 0.1 sec and say what MacKenzies's chronic illness is..Way too often RSD gets shoved under the rug..lacking noteriey it/we deserve...ultimately lacking in support and knowledge... I feel this segment left JQ public scratching their heads saying..so whats wrong with her.. ???? They filmed the painful injection but why??? We had a blip of time to make mention of RSD and we didn't get it.. Until one lives with our ugly 4 headed monster they have NO idea what it is like.. Thank goodness MacKenzie is mobile and looks health, many of us are not as lucky and if they can walk it is not a pretty walk not hold their upper body up without pain..




You would be surprised at how many people have viewed the extra segment on the cnn/ heros website and sent Mackenzie emails on her website, expressing their well sishes for pain relief. Hopefully CNN will do a followup story about her later on and focus more on the RSD. Hey its a start in the right direction.

CNN.com article
 

Teen turns escape from pain into charity
By Allie Brown, CNN
http://www.cnn.com/2010/LIVING/04/08...rup/index.html

I was fully aware of the content of the story focusing on a way to block out an illness. My issue is this : Larry King said he would like to introduce a young girl who suffers from an extremely painful and debilating disease-PERIOD!!!!
It would have taken a NANO second to say the words RSD or CRPS.,so I still have issues,but am glad that there may be more follow ups.

Also have to agree with previous post re: showing her with Doctor getting shots and still no mention of what her ailment is. makes ME scratch my head-Carol

Have you watched the video? In the first few seconds she tells waht she suffers from. Reflex Sympathetic Dystrophy. Check out the video on the link above.