Another reason to love Green Day

[mamaScarlett]

I get your take on it, you make valid points.<br><br>I guess I just am coming from the days of remembering when we were put into rooms with 8 other patients, and had to endure all types of bad conditions. When docs would spend 14 hours digging into my arm trying to get awful peripheral ivs-and then old school piccs in, only to have them blow days later. Now, largely bc of the cff who pushed for years for more research for us, and better techniques-those days are gone! They seem like cave man days, but its us cfers who are 30+ that paved the way and caused the cff to do more research that has changed our lives.<br>I remember what it was like back then, and believe me its come WAY far. Of course there's still so far to go. Hopefully they will improve on some flaws. And most of all, hopefully they'll continue to spotlight our cause to get us more drugs.<br>

 

[julie]

Yeah, I see your point to Scarlett. I DO think that they have done some great things, I really really do. And Mark was the poster child for the CFF back in the early 80's. But I've honestly had nothing but VERY difficult dealings with them in the last 5 years, and I've had others hae those same difficult and negative dealings. That's not how a "support" organization should be, in my opinion.

and I think that if they are going to do things that prolong the life of people with CF, they also need to take action to ensure that the QUALITY of life is up to par, and I don't feel that they are anywhere close to doing that.

Bill, it's just my opinion. Take it or leave it. But no, I'm not going to cut them any slack. They are a multi-million dollar company (if not more) and I don't think they are doing all they can. I'm not impressed with them, and therefore refuse to donate to their cause anymore. I will send my $$$ where I think it is better used, with less overhead costs and no CEO's getting paid hundreds of thousands a year- it's gross!

 

[julie]

Yeah, I see your point to Scarlett. I DO think that they have done some great things, I really really do. And Mark was the poster child for the CFF back in the early 80's. But I've honestly had nothing but VERY difficult dealings with them in the last 5 years, and I've had others hae those same difficult and negative dealings. That's not how a "support" organization should be, in my opinion.

and I think that if they are going to do things that prolong the life of people with CF, they also need to take action to ensure that the QUALITY of life is up to par, and I don't feel that they are anywhere close to doing that.

Bill, it's just my opinion. Take it or leave it. But no, I'm not going to cut them any slack. They are a multi-million dollar company (if not more) and I don't think they are doing all they can. I'm not impressed with them, and therefore refuse to donate to their cause anymore. I will send my $$$ where I think it is better used, with less overhead costs and no CEO's getting paid hundreds of thousands a year- it's gross!

 

[julie]

Yeah, I see your point to Scarlett. I DO think that they have done some great things, I really really do. And Mark was the poster child for the CFF back in the early 80's. But I've honestly had nothing but VERY difficult dealings with them in the last 5 years, and I've had others hae those same difficult and negative dealings. That's not how a "support" organization should be, in my opinion.
<br />
<br />and I think that if they are going to do things that prolong the life of people with CF, they also need to take action to ensure that the QUALITY of life is up to par, and I don't feel that they are anywhere close to doing that.
<br />
<br />Bill, it's just my opinion. Take it or leave it. But no, I'm not going to cut them any slack. They are a multi-million dollar company (if not more) and I don't think they are doing all they can. I'm not impressed with them, and therefore refuse to donate to their cause anymore. I will send my $$$ where I think it is better used, with less overhead costs and no CEO's getting paid hundreds of thousands a year- it's gross!

 

[Printer]

OK Julie.

 

[Printer]

OK Julie.

 

[Printer]

OK Julie.

 

[krisgabes]

I have to agree with the rest of the CFers here. The CFF is a fantastic organization. Julie, I think you need to take a step back and think about WHY we may be taking more offense to things. As far as I read, you do not have CF. Yes, you have familial ties to it, but you are not the CFer here. I think it's not quite right to put this organization down ALL the time. I've read a lot of your posts and whenever the CFF is mentioned I've read your opinions on it. I'm sure you do great work with your organization for CF, but I'm also sure that you wouldn't like someone talking about your organization that way. You don't have to agree with the CFF's actions, but please keep in mind that it comes across as disrespectful when you put it down all the time.

You definately are a woman who does her homework and you sound like a very intelligent lady as well. I saw your Judge Judy episode (my favorite show), you seem like a lovely person. I hope you are very successful with your organization, but your posts sometimes tend to come across as argumentative. So I think maybe you should think twice before you post controversial issues like this on the forums.

 

[krisgabes]

I have to agree with the rest of the CFers here. The CFF is a fantastic organization. Julie, I think you need to take a step back and think about WHY we may be taking more offense to things. As far as I read, you do not have CF. Yes, you have familial ties to it, but you are not the CFer here. I think it's not quite right to put this organization down ALL the time. I've read a lot of your posts and whenever the CFF is mentioned I've read your opinions on it. I'm sure you do great work with your organization for CF, but I'm also sure that you wouldn't like someone talking about your organization that way. You don't have to agree with the CFF's actions, but please keep in mind that it comes across as disrespectful when you put it down all the time.

You definately are a woman who does her homework and you sound like a very intelligent lady as well. I saw your Judge Judy episode (my favorite show), you seem like a lovely person. I hope you are very successful with your organization, but your posts sometimes tend to come across as argumentative. So I think maybe you should think twice before you post controversial issues like this on the forums.

 

[krisgabes]

I have to agree with the rest of the CFers here. The CFF is a fantastic organization. Julie, I think you need to take a step back and think about WHY we may be taking more offense to things. As far as I read, you do not have CF. Yes, you have familial ties to it, but you are not the CFer here. I think it's not quite right to put this organization down ALL the time. I've read a lot of your posts and whenever the CFF is mentioned I've read your opinions on it. I'm sure you do great work with your organization for CF, but I'm also sure that you wouldn't like someone talking about your organization that way. You don't have to agree with the CFF's actions, but please keep in mind that it comes across as disrespectful when you put it down all the time.
<br />
<br />You definately are a woman who does her homework and you sound like a very intelligent lady as well. I saw your Judge Judy episode (my favorite show), you seem like a lovely person. I hope you are very successful with your organization, but your posts sometimes tend to come across as argumentative. So I think maybe you should think twice before you post controversial issues like this on the forums.

 

[chrissyd]

I think there is more they could do for adults with CF, but I am thankful for what they have done.

Back to the OP - I'm not a huge Green Day fan but I do like them more now that I've seenyour post! Thanks for sharing!

 

[chrissyd]

I think there is more they could do for adults with CF, but I am thankful for what they have done.

Back to the OP - I'm not a huge Green Day fan but I do like them more now that I've seenyour post! Thanks for sharing!

 

[chrissyd]

I think there is more they could do for adults with CF, but I am thankful for what they have done.
<br />
<br />Back to the OP - I'm not a huge Green Day fan but I do like them more now that I've seenyour post! Thanks for sharing!

 

[julie]

You are right Kristen, I don't have Cf. But I don't see how that is the least bit relevant, considering my childrens father has it. This is a site for everyone, NOT just those with CF.

I've put thousands of dollars into the CFF, and I sincerely regret it. It's just my opinion, it's not "right" or "wrong", it's just how I feel after some very intricate dealings with them.

I would NEVER judge someone for supporting them, everyone needs to do what they feel is going to work for them. But surely it's not fair to say "oh, it's ok to talk about how much we support the CFF, but Julie, it's not ok for you to talk about why you don't support them". Come on, that's such a double standard!

I'm not insulting someone or degrading them for their support decision, I simply stated I wish the proceeds went to something other than the CFF, and then when someone said something about it, I explained WHY I felt that way.

 

[julie]

You are right Kristen, I don't have Cf. But I don't see how that is the least bit relevant, considering my childrens father has it. This is a site for everyone, NOT just those with CF.

I've put thousands of dollars into the CFF, and I sincerely regret it. It's just my opinion, it's not "right" or "wrong", it's just how I feel after some very intricate dealings with them.

I would NEVER judge someone for supporting them, everyone needs to do what they feel is going to work for them. But surely it's not fair to say "oh, it's ok to talk about how much we support the CFF, but Julie, it's not ok for you to talk about why you don't support them". Come on, that's such a double standard!

I'm not insulting someone or degrading them for their support decision, I simply stated I wish the proceeds went to something other than the CFF, and then when someone said something about it, I explained WHY I felt that way.

 

[julie]

You are right Kristen, I don't have Cf. But I don't see how that is the least bit relevant, considering my childrens father has it. This is a site for everyone, NOT just those with CF.
<br />
<br />I've put thousands of dollars into the CFF, and I sincerely regret it. It's just my opinion, it's not "right" or "wrong", it's just how I feel after some very intricate dealings with them.
<br />
<br />I would NEVER judge someone for supporting them, everyone needs to do what they feel is going to work for them. But surely it's not fair to say "oh, it's ok to talk about how much we support the CFF, but Julie, it's not ok for you to talk about why you don't support them". Come on, that's such a double standard!
<br />
<br />I'm not insulting someone or degrading them for their support decision, I simply stated I wish the proceeds went to something other than the CFF, and then when someone said something about it, I explained WHY I felt that way.

 

[krisgabes]

I never said anything about ostracizing you from the site due to you not having CF. I said that maybe you don't understand why someone may take your opinion to heart because you don't have it. I also didn't create a double standard, although I suppose that's how you took it. I never said it's not ok to state your opinion, maybe it's just because I've read it so many times I take it offensively as well as some others. That's all. I'm not one for arguing so as to change the original post topic so I'm going to gracefully step back from this argument as it could go on for a while. Good luck with your organization and its future. I'm sure you will continue to thrive and help many people which, I agree, is the main purpose of this site.

 

[krisgabes]

I never said anything about ostracizing you from the site due to you not having CF. I said that maybe you don't understand why someone may take your opinion to heart because you don't have it. I also didn't create a double standard, although I suppose that's how you took it. I never said it's not ok to state your opinion, maybe it's just because I've read it so many times I take it offensively as well as some others. That's all. I'm not one for arguing so as to change the original post topic so I'm going to gracefully step back from this argument as it could go on for a while. Good luck with your organization and its future. I'm sure you will continue to thrive and help many people which, I agree, is the main purpose of this site.

 

[krisgabes]

I never said anything about ostracizing you from the site due to you not having CF. I said that maybe you don't understand why someone may take your opinion to heart because you don't have it. I also didn't create a double standard, although I suppose that's how you took it. I never said it's not ok to state your opinion, maybe it's just because I've read it so many times I take it offensively as well as some others. That's all. I'm not one for arguing so as to change the original post topic so I'm going to gracefully step back from this argument as it could go on for a while. Good luck with your organization and its future. I'm sure you will continue to thrive and help many people which, I agree, is the main purpose of this site.

 

[nmw0615]

I tried to keep from commenting on this, because I can become quite hot-headed about things, but I just have to say something.

The CFF website states, "The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease."

From how I see things, this is what they do. They are trying to find a way to cure this disease. Could they do more for quality of life? Of course. However, to me, I am partially responsible for my quality of life. Yes, they should find a way to help more people with this part of their life. But in all honesty, I would much rather have money go to finding a way to cure it, so no other person would have to go through what we do.

I believe that a cure will not be found in my lifetime. I've thought this for years. But if I can raise and donate money to an organization that is working to cure it for other people, I can deal with the difficulties this life presents. I can deal with struggling for money to pay hospital bills, doctor visits and medications if it means my kids or grand-kids won't have to deal with it all at. That's just my two cents.

-+-+-+
As for the original post about Green Day:

It made my day to read that. Listening to their music now has a new level of appreciation for them as a band and people.