CF awareness

[Emily65Roses]

Are we telling just any old story we please, as long as it's about CF? Can I include one, perhaps, about ignorant and rude people? I'd love to make note of that. If that's okay, let me know, and I'll write something and email it to you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[julie]

em, I would love to include stories and feel free to email it to me but keep in mind... I feel the same way, get frustrated and rude with people more often than not, but that's not the impression I want to relay or I fear we won't get a space (our chances are already pretty slim). Does that make sense???

 

[Emily65Roses]

Absolutely. My idea (though I'm usually a rude little wench) was to just tell stories about the way people act towards us because they don't know any better. Kind of like, hey pay attention and learn here so you don't treat us the same way when we don't deserve it type thing. Not like haha this guy made fun of me, and I broke his nose type thing. Does that make sense? Heh. I can't always quite get across what I mean.

In the meantime, if I can think of a different topic entirely, I'll go with that one and write about it. I'm just having trouble coming up with anything. I haven't had a tx. I haven't had any major major life/death issues yet, so I'm drawing a blank. If you have any general ideas to give me a push in the right direction, feel free to share. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

My husband and I are constantly annoyed by the absence of CF awareness. Like the Great Strides walk for instance. In Knoxville, TN we have so many disease awareness/fundraisers like walks. Every single walk except the CF walk gets time on news broadcasts, TV and Radio. Why does no one care about the CFers other than their relatives, friends and doctors? We are available for anything you need us to be to tell our story or sign a petition.
Just let us know,
Lynsey and Chuck- parents to Avery 2yrs w/CF and Rhett w/o CF

 

[rose4cale]

Lynsey, it's the same way in my area. GREAT STRIDES had no publicity, yet we tripled the fundraising dollars compared to the Breast Cancer awareness run that was plastered on the tv, radio and papers. I think it's because with CF family and friends do everything they can to raise as much as we can and with the breast cancer walks or the better known illnesses people participate in them more like they are a social status type of event, if that makes sense. I'm not putting down their efforts as I know some people particpate in them for personal reasons, it's just they don't have as much at stake as we do.

 

[haylz]

[No message]

 

[haylz]

I think this sounds like a great idea, just to get more awareness for CF.
Like someone else said, I think the smoking issue is a big one and allso the cross infection. I dont think people understand the issues related to this and I think its important because so many other diseaces (ie cancer) have suport groups etc for everyone to share their feelings (kinda like this bord but they can do it in person!) i think its a fairly big deal but people dont usualy understand.
and just to ad to what emily said about people rude and ignorant,that reminds me of all the dirty looks i get when i park in a disabled prking bay even though i have a sticker and am entitled to. views like this are very comon it realates to awareness and i think if you put it accross in the right way it shouldnt sound too rude.

 

[senatorgraham]

I would like to thank Julie for all her efforts on this.

It is great that everyone is willing to get so involved with this. However, realistically speaking are chances of getting air time for this subject are slim and if we get some (I hope we do) it will probably be a 5-10 minute segment, unless someone gets real interesed and we get a whole show (wishful thinking!!!!!!).

That being the case I think we should stick with things that paint us cfers in the best possible light and/or, for lack of a better phrasing the most educational value to the mass public.

So with regards to Emily and Haylz suggestions....one way to go about it is to address the fact that cfers most often look very healthy or normal but really are quite ill. That will explain the placard and problems associated with it and to a lesser degree address the issue of some "rude and ignorant people". Will never get them all to understand but it would be nice to educate a few of them.

I look forward to the opportunity to comment on the first draft of the letter.

And to Haylz I get the same dirty looks and comments about my disabled placard..I have learned to have fun with it. I modify my response depending on who's commenting....sometimes laughter really is the best medicine.

Sincerely,

"Senatorgraham"

"My Friends are my estate. Forgive me the avarice of hoarding them".

 

[rose4cale]

We were just saying the other day, that either people have never heard of CF or they know someone with it. People just aren't aware of it unless it somehow effects them.