Movie I heart Huckabees and mention of CF

[anonymous]

I think this is a great idea. An aspect that I would like to see get more attention is that CF people can look perfectly healthy on the outside even when they are far from that on the inside... I am fairly new to CF (one year since my daughters diagnosis) but I am already very tired of people thinking CF is no big deal bc Sydney looks and acts so "normal". I personally think it can be good for CFers (and their loved ones) when the media plays up the severity of it bc it gets the attention of people. Also, people (our friends/family) seem to conclude that Sydney has a "mild" case of CF since she isn't sickly or doing lots of treatments (at the moment) but I try to tell them that her "status" can change at any time - does that make sense? I think that people need to know that this is a serious disease that can be very deceiving and tricky to treat.

Please let me know how I can help!
Kelli (mom of Sydney 2 wcf)

 

[anonymous]

That all sounds very good. I propose all who want to submit comments/input, do so by creating a few paragraphs of things that are of concern (like what has been mentioned here) and then I, (or if anyone else wants, I have no preferene) can put them all together so we can all make one clear point, and then everyone gets a copy of that letter. Then, we can add our own personal accounts, events, concerns in whatever order we wish, or completely separate and then submit it. Does that sound good?

Also, does anybody have any additional recommendations for who else to submit the letters to?

Julie

 

[purpleangel28282]

This is an excellent idea! I would love to help with sending the emails; I'll be sure to check back about what's going on. I also wanted to note that I've seen the mention of CF in an episode of 7th Heaven and in Touched By an Angel in case anyone was interested.

 

[anonymous]

Just to let everyone know, I have this project in the back of my mind but i have two weeks of school left after this weekend and am madly working on my final for english (it's panning out to be about 75 pages, and I have three interviews left, data to process....) and am seriously stressing. so, I won't be able to write up "my soapbox" stuff that I want addressed, but I still welcome anyone else who wants to do a write up of the "issues" they would like to have a TV show address, to then combine in a bigger letter. I don't know if it would be best for us to post a letter here or what? Let me know what you all think. After the last weekend this month, I will have much more time to dedicate my time and energy to this. I am so glad there is much interest fo this.

Julie