CF AWARENESS CAMPAGINE 2006

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julie

New member
Writing to Oprah about CF was brough up on another topic and it got me thinking that it might be time for another CF awarness campagin. 2005's only yielded 1 successful response that I know of, can't remember who was the lucky interviewee though.

Is anyone interested in doing that again this year? I have a letter saved from last year that many of us from the forum compiled together, and then it was emailed to everyone (maybe it can be posted on the forum as a document for dowload by the moderators??) and people made changes, made it more personal, shortened it, lenghtened it...

We also came up with a list of addresses for many shows such as Oprah, 60 minutes, dateline NBC and many people also found the address for their local news stations and radio stations and mailed letters out.

Additionally, many people were willing to be contacted for interviews if the need were to arise. I still have names, emails, some phone numbers and some mailing addresses for about 30 people on this website. The word document was emailed out to everyone to include with their letters. That way, whichever company was recieving the letter could look to see if someone in their state was interested in being interviewed. I'd love to add MORE names to that list this year and do all of this all over again.

Since May is Cystic Fibrosis Awareness month and many Great Strides walks will be going on then, this may be perfect timing to get those letters together and mailed out.

Let me know what the general consensus is on this and I'll get the ball rolling!
Any additional ideas or changes from last year are most welcome too!!!
 
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skh

Guest
Julie, I wouldn't mind sending this letter to my local newspapers. Is that what you are asking?

Sue
 
J

julie

New member
If those who are interested can email me, I'll send out the "stuff". It will be the same letter from last year, but it's kind of a "get you started" and PLEASE make changes as you need to within the letter or you can write your own if you prefer.

If those who are interested can please email me at <a target=_blank class=ftalternatingbarlinklarge href="mailto:division@hotmail.com">division@hotmail.com</a> and indicate the following:

Whether you just want to recieve the letter and other items (it will be 3 word document attachments- the letter, the interview contact list to mail with the letter, and mailing addresses of about 10 TV shows/stations)

OR

if you want to recieve the letter and other items (again 3 docs. total) PLUS have your name added to the "interview contact list". This list will be emailed to EVERYONE on this forum who requests it, plus mailed out to TV show producers, newspapers, radio stations, News stations... so please put as limited information as you want to be shared. (I personally have my name listed-NO last name- my city and state and my email address and that my husband is 25 with CF). You can always choose to add YOUR OWN information within your letter or to the document before you send it out. Please remember to email me the information you want included in the "interview contact list" <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'll wait to send this list out until this Saturday, that way those who want to can have their names added.
 
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ashton2005

New member
Julie i would love to participate i actually already email oprah a few times also so we will see jsut let me know what else i can do!!

christi
ashton 5 mo old w/ cf
abbi 5 yo w/o cf
 
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ashton2005

New member
Julie i cannot email you but i would love to help with both ways the letter and and to be on the contact list!!
christi
 
J

julie

New member
Can you PM me on this site with the information you want put on the contact list? You can also post it here, but any joe schmoe can view this site so a PM might be better.

I can post the letter on this site, but the last time I did that, it changed the punctuation to strange symbols (it seems to do this with anything written up in word) but the moderators might have fixed it before because it was brought up.

Let me know!!!

Julie
 
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anonymous

New member
We always have the governor sign a proclamation declaring May as CF Awareness month and this year I'm contacting the local mayors, too. The only problem we have is there's some outfit called the CF Association and they always have a big to-do in SEPTEMBER and do the same thing. So there's been some confusion with the gov's office Luckily it's only in their town, Bismarck, but just seems kinda silly that they don't do stuff like everyone else in May.
 
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Ryleigh

New member
I wonder if enough people emailed Oprah and other 'big' people we
would get a response! Great Idea, I would love to see CF getting
attention in May!
 
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skh

Guest
Anon, I ran into that problem last year at about this time. I couldn't figure out why the ND Cystic Fibrosis Association wouldn't honor the same month as the rest of the country. I think if May is the National CF Awareness month then that's what we should go with. I live in Mandan - where do you live?

Sue
 
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anonymous

New member
We live in Hillsboro and have gotten involved with the CFF out of St. Paul. Don't know what the deal is with the CF Association. I've tried emailing them in the past, especially during the legislative session, trying to encourage them to support CF things -- newborn screening, enzymes in the classroom...

Last year there was a little girl with a disease called Russell Silver Disease -- Only person in the state with it -- the legislature waived financial considerations for HER and only people with her disease, so her parents, who had health insurance were eligible to have all their expenses above and beyond those not covered by insurance to be paid for by Social Services. Several of us who also have children with genetic diseases, as well as a person from the state social service organization sent letters asking -- what about the 56 people with CF in our state or cerebral palsy, etc. etc. This was a kid who was going to be SHORT and needed growth hormones -- that was it! We got blown off not only by our legislative officials, but didn't hear boo from the CFA.

Pretty much have never ever gotten a response from them.
 
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anonymous

New member
I usually go onto the CFF webpage and get examples of letters and proclamations. I've never written a letter to the editor, like they suggest, but I did get my photo taken with the governor last year when he signed a proclamation.

I also contact my senators and reps to encourage them to support the Senate declaration. One of the senators in our state was on the committee. I even contacted the President in 2003 -- got a response for one of his lackey's saying at this time he couldn't support it for whatever reasons.

Liza
 
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skh

Guest
Anon, are you by any chance going to the wine tasting fund raiser that the CFF out of St. Paul is hosting? I believe it is April 8th. Some of my family and myself are planning on going.

I would love to have someone to discuss our local CF Association with. If you would feel comfortable private message me or leave a note on my blog (skh) I would really appreciate it!

Sue
 
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