Cystic fibrosis Month

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anonymous

New member
There is a resolution 115 in Congress to make May National CF Awarenees month. Everyone needs to contact their Senators to make this happen. The more voices the better.
 
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anonymous

New member
On April 8, 2004, the US Senate passed resolution S298 declaring May 2004, National Cystic Fibrosis Awareness Month.

thanks to Sen. Ben Nighthorse Campbell of Colorado
 
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allie1

New member
I'm a little disappointed with how well the CF Foundation advertises about CF awareness. We just participated in our very first Great Strides and it was amazing how little the foundation did to promote it. I keep seeing ads about the MS walks and Breast cancer walks but nowhere was the Great Strides info. Is the foundation just bad in general about these things or is it my local chapter?
 
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SmallFrys

New member
I am not trying to make excuses. But, advertising isn't free. I have been talking it up all over the place...put posters up everywhere...
 
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AimeeSue82

New member
I believe that when S298 passed last year, it was to make May of 2004 CF Awareness month. 2004 only, it doesn't continue every year. That's what I was told my someone from the CF foundation.

-Aimee/22/Colorado
 
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Purplelungs

New member
I have a calendar for 2005 from the CF foundation themselves and it says may is CF awareness month....yeah someone in charge needs to get info straight then tell us what to do. I mean come on... this is silly, one chapter says 2004 only, one says every may...then they dont tell us other stuff...I guess we dont get answers because the foundation mainly deals with fundraising for cures....Does anyone out there know for sure?
 
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anonymous

New member
try to get your local news stations to come to Great Strides. That's what I'm doing this year. It's free advertising.
 
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anonymous

New member
My daughter and nephew were on the local news here in Houston about the Great Strides event two years ago. Then my children they were on the front cover of one of the sections of the newspaper last year about the walk. Hundreds of thousands of people must have either seen the news report or take the Houston Chronicle. Do you know how many donations were made as a result - two (and our family knew one of the individuals who made the donation). I also wondered where were all of the radio announcements, newspaper advertisements about our cf walk when we first got involved with Great Strides. It didn't take me long to realize that it is not money well spent. Yes, advertising does help let people know about the disease, but for actual donations it seems people only donate if they themselves are personally affected (ex- a friend has cf).
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf and aunt to Joseph, 7 with cf
 
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Mockingbird

New member
Just having an awareness month isn't really going to change anything, anyway. If you look around a bit, you'll find lots of causes have their own month, but nobody really knows about it. Besides, how many people dramtically increased their knowledge of black history when that month rolled around? Seriously, show of hands, how many people? It was advertised a lot. Or how about Child Abuse Prevention Month? I'll check the statistics, but I don't think it made that big of a difference.

About the Great Strides walk, it does stink that breast cancer and MS got all the publicity (not that those aren't good causes, too) but that's just the way it is.... Like when people are more sympathetic to smokers with lung cancer than us with CF. For some reason people don't identify with CF well unless they're directly affected by it.

Jarod
22 w/cf

P.s. I'm not trying to be mean, I'm just pointing out there's not much we can do to raise awareness. Better to just not worry about it, I say.
 
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reillybug

New member
On the website for CFF, it does say that May is CF Awareness Month. If you click on the following link, <a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/legislative_action/cf_awareness/">CF Awareness Month</a> it takes you to a page which has different things to post such as posters, flyers and such. I copied the page of CF Messages, and have forwarded it to practically everyone I know and requested they keep it going. So far, I have received several messages from family & friends who said that they went to the cff.org site, and have learned more about the disease. I say, the more people that know about it, the better. Who knows, maybe some of the people who receive the email may actually support CF research! What does it hurt to at least try? <img src="i/expressions/present.gif" border="0">
 
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anonymous

New member
We have been raising awareness by doing public fundraising events. They have been very successful and our community has been very supportive. It is really neat to hear "CF conversations" during the events as people who knew nothing about CF are given some information and are able to chat about it while eating. Your local chapter should have a Great Strides planning committe which you can join. This might be your best shot at being able to voice your opinion and concerns. Our Chapter has one person who is in charge of 8 (give or take a few) walks so as you can guess, she is somewhat limited in what she can do for each walk...that is where the planning committee comes in! This is my first year and it has been really great to get in on the ground floor and help make things happen!! With the outreach we have been doing, we have a large group (40 people so far have sent in $$ and committments to walk) walking with us and there are at least 15 of the people that we haven't even met yet that will be walking with "Team Sydney". It is really exciting to us!!

You CAN spread awareness, it just takes a lot of work! We will be pretty glad when GS is over this month bc we have exhausted ourselves with it!! It is well worth the exhaustion though!!!

Good Luck!
Kelli (mom of Sydney 22 months wcf)
<a target=new class=ftalternatingbarlinklarge href="http://sydneymyers-ivil.tripod.com/
">http://sydneymyers-ivil.tripod.com/
</a>
 
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