I love Green Day. They are also my son's favorite band. I love them even more now that they support the Cystic Fibrosis Foundation. Wish I could have gone to this show they did to fundraise for CF. Hopefully it'll copy past.<div><br></div><div>http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=7034&idUser=510224</div>
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Another reason to love Green Day
- Thread starter Rebjane
- Start date
I love Green Day. They are also my son's favorite band. I love them even more now that they support the Cystic Fibrosis Foundation. Wish I could have gone to this show they did to fundraise for CF. Hopefully it'll copy past.<br>http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=7034&idUser=510224
I love Green Day. They are also my son's favorite band. I love them even more now that they support the Cystic Fibrosis Foundation. Wish I could have gone to this show they did to fundraise for CF. Hopefully it'll copy past.<br>http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=7034&idUser=510224
mamaScarlett
Active member
I saw them in their broadway show which also had some fundraising for Cf, they were awesome.<br>Julie-I understand when it comes to the inner workings of the fundraising aspect why you'd have your issues. But to be honest it kinda offended me to read that. I know without the CFF that I would NOT be here today, bc they have raised awareness since my diagnosis in 1984 thats helped me get new medications to be here still! Its bc of the cff that we have accredited centers that have to adhere to a higher level of care, which gives us cfers a better quality of life, and that actually affects us on a day to day basis. I would really hate for someone to read that and think that the cff is a bad organization to contribute to. Your work is good too!!! But my point is that BOTH are good.<br>Just a thought from a cfers perspective.<br>
mamaScarlett
Active member
I saw them in their broadway show which also had some fundraising for Cf, they were awesome.<br>Julie-I understand when it comes to the inner workings of the fundraising aspect why you'd have your issues. But to be honest it kinda offended me to read that. I know without the CFF that I would NOT be here today, bc they have raised awareness since my diagnosis in 1984 thats helped me get new medications to be here still! Its bc of the cff that we have accredited centers that have to adhere to a higher level of care, which gives us cfers a better quality of life, and that actually affects us on a day to day basis. I would really hate for someone to read that and think that the cff is a bad organization to contribute to. Your work is good too!!! But my point is that BOTH are good.<br>Just a thought from a cfers perspective.<br>
mamaScarlett
Active member
I saw them in their broadway show which also had some fundraising for Cf, they were awesome.<br>Julie-I understand when it comes to the inner workings of the fundraising aspect why you'd have your issues. But to be honest it kinda offended me to read that. I know without the CFF that I would NOT be here today, bc they have raised awareness since my diagnosis in 1984 thats helped me get new medications to be here still! Its bc of the cff that we have accredited centers that have to adhere to a higher level of care, which gives us cfers a better quality of life, and that actually affects us on a day to day basis. I would really hate for someone to read that and think that the cff is a bad organization to contribute to. Your work is good too!!! But my point is that BOTH are good.<br>Just a thought from a cfers perspective.<br>
I get where you are coming from. But my issues with them don't stem from the inner workings of the fundraising.
This is just my view/opinion but here's why I have issues: They have done AMAZING things with medications, research, accredited centers and such- YES. However, they have SERIOUSLY dropped the ball on following up on over 30 very serious complaints at the University of Washington Medical Center (I know this first hand because I live here) and in talking with other CFers, this is NOT isolated only to this particular center. They are NOT doing their job in monitoring accredidations. That's issue #1- and a serious one that that!
Issue #2 is that with all of these great things that have prolonged the life of a CFer, does NOT come any support for QUALITY of life. Sure, they are extending the quantity (years) of life with all these great treatments. But there are NOT a lot of support measures out there to make sure quality of life doesn't go down the pooper. I do know they have some programs, but the income threasholds are not much to work with, especially in families that have more than 1 CFer so they have MUCH MORE out of pocket expense. In the last few years I think they have been doing a bit better with "support", but I still think they need to come a long way, and I GREATLY disapprove of the amount of money their CEO makes. I mean, sure he deserves to be paid, but NOT that much. SOOOO much more could come of less pay for him. It's gross.
And that is why I do NOT support the CFF fundraising. I still CF fundraise, but my $$$$ dollars go to my organization (of which BTW I do NOT pay myself, and come out of pocket about $3500 per year, Id like to see the CEO of CFF do that!!!), and to other organizations that provide DIRECT FINANCIAL SUPPORT to CFers. The CFF is money hungry, that is my take on it.
This is just my view/opinion but here's why I have issues: They have done AMAZING things with medications, research, accredited centers and such- YES. However, they have SERIOUSLY dropped the ball on following up on over 30 very serious complaints at the University of Washington Medical Center (I know this first hand because I live here) and in talking with other CFers, this is NOT isolated only to this particular center. They are NOT doing their job in monitoring accredidations. That's issue #1- and a serious one that that!
Issue #2 is that with all of these great things that have prolonged the life of a CFer, does NOT come any support for QUALITY of life. Sure, they are extending the quantity (years) of life with all these great treatments. But there are NOT a lot of support measures out there to make sure quality of life doesn't go down the pooper. I do know they have some programs, but the income threasholds are not much to work with, especially in families that have more than 1 CFer so they have MUCH MORE out of pocket expense. In the last few years I think they have been doing a bit better with "support", but I still think they need to come a long way, and I GREATLY disapprove of the amount of money their CEO makes. I mean, sure he deserves to be paid, but NOT that much. SOOOO much more could come of less pay for him. It's gross.
And that is why I do NOT support the CFF fundraising. I still CF fundraise, but my $$$$ dollars go to my organization (of which BTW I do NOT pay myself, and come out of pocket about $3500 per year, Id like to see the CEO of CFF do that!!!), and to other organizations that provide DIRECT FINANCIAL SUPPORT to CFers. The CFF is money hungry, that is my take on it.
I get where you are coming from. But my issues with them don't stem from the inner workings of the fundraising.
This is just my view/opinion but here's why I have issues: They have done AMAZING things with medications, research, accredited centers and such- YES. However, they have SERIOUSLY dropped the ball on following up on over 30 very serious complaints at the University of Washington Medical Center (I know this first hand because I live here) and in talking with other CFers, this is NOT isolated only to this particular center. They are NOT doing their job in monitoring accredidations. That's issue #1- and a serious one that that!
Issue #2 is that with all of these great things that have prolonged the life of a CFer, does NOT come any support for QUALITY of life. Sure, they are extending the quantity (years) of life with all these great treatments. But there are NOT a lot of support measures out there to make sure quality of life doesn't go down the pooper. I do know they have some programs, but the income threasholds are not much to work with, especially in families that have more than 1 CFer so they have MUCH MORE out of pocket expense. In the last few years I think they have been doing a bit better with "support", but I still think they need to come a long way, and I GREATLY disapprove of the amount of money their CEO makes. I mean, sure he deserves to be paid, but NOT that much. SOOOO much more could come of less pay for him. It's gross.
And that is why I do NOT support the CFF fundraising. I still CF fundraise, but my $$$$ dollars go to my organization (of which BTW I do NOT pay myself, and come out of pocket about $3500 per year, Id like to see the CEO of CFF do that!!!), and to other organizations that provide DIRECT FINANCIAL SUPPORT to CFers. The CFF is money hungry, that is my take on it.
This is just my view/opinion but here's why I have issues: They have done AMAZING things with medications, research, accredited centers and such- YES. However, they have SERIOUSLY dropped the ball on following up on over 30 very serious complaints at the University of Washington Medical Center (I know this first hand because I live here) and in talking with other CFers, this is NOT isolated only to this particular center. They are NOT doing their job in monitoring accredidations. That's issue #1- and a serious one that that!
Issue #2 is that with all of these great things that have prolonged the life of a CFer, does NOT come any support for QUALITY of life. Sure, they are extending the quantity (years) of life with all these great treatments. But there are NOT a lot of support measures out there to make sure quality of life doesn't go down the pooper. I do know they have some programs, but the income threasholds are not much to work with, especially in families that have more than 1 CFer so they have MUCH MORE out of pocket expense. In the last few years I think they have been doing a bit better with "support", but I still think they need to come a long way, and I GREATLY disapprove of the amount of money their CEO makes. I mean, sure he deserves to be paid, but NOT that much. SOOOO much more could come of less pay for him. It's gross.
And that is why I do NOT support the CFF fundraising. I still CF fundraise, but my $$$$ dollars go to my organization (of which BTW I do NOT pay myself, and come out of pocket about $3500 per year, Id like to see the CEO of CFF do that!!!), and to other organizations that provide DIRECT FINANCIAL SUPPORT to CFers. The CFF is money hungry, that is my take on it.
I get where you are coming from. But my issues with them don't stem from the inner workings of the fundraising.
<br />
<br />This is just my view/opinion but here's why I have issues: They have done AMAZING things with medications, research, accredited centers and such- YES. However, they have SERIOUSLY dropped the ball on following up on over 30 very serious complaints at the University of Washington Medical Center (I know this first hand because I live here) and in talking with other CFers, this is NOT isolated only to this particular center. They are NOT doing their job in monitoring accredidations. That's issue #1- and a serious one that that!
<br />
<br />Issue #2 is that with all of these great things that have prolonged the life of a CFer, does NOT come any support for QUALITY of life. Sure, they are extending the quantity (years) of life with all these great treatments. But there are NOT a lot of support measures out there to make sure quality of life doesn't go down the pooper. I do know they have some programs, but the income threasholds are not much to work with, especially in families that have more than 1 CFer so they have MUCH MORE out of pocket expense. In the last few years I think they have been doing a bit better with "support", but I still think they need to come a long way, and I GREATLY disapprove of the amount of money their CEO makes. I mean, sure he deserves to be paid, but NOT that much. SOOOO much more could come of less pay for him. It's gross.
<br />
<br />And that is why I do NOT support the CFF fundraising. I still CF fundraise, but my $$$$ dollars go to my organization (of which BTW I do NOT pay myself, and come out of pocket about $3500 per year, Id like to see the CEO of CFF do that!!!), and to other organizations that provide DIRECT FINANCIAL SUPPORT to CFers. The CFF is money hungry, that is my take on it.
<br />
<br />This is just my view/opinion but here's why I have issues: They have done AMAZING things with medications, research, accredited centers and such- YES. However, they have SERIOUSLY dropped the ball on following up on over 30 very serious complaints at the University of Washington Medical Center (I know this first hand because I live here) and in talking with other CFers, this is NOT isolated only to this particular center. They are NOT doing their job in monitoring accredidations. That's issue #1- and a serious one that that!
<br />
<br />Issue #2 is that with all of these great things that have prolonged the life of a CFer, does NOT come any support for QUALITY of life. Sure, they are extending the quantity (years) of life with all these great treatments. But there are NOT a lot of support measures out there to make sure quality of life doesn't go down the pooper. I do know they have some programs, but the income threasholds are not much to work with, especially in families that have more than 1 CFer so they have MUCH MORE out of pocket expense. In the last few years I think they have been doing a bit better with "support", but I still think they need to come a long way, and I GREATLY disapprove of the amount of money their CEO makes. I mean, sure he deserves to be paid, but NOT that much. SOOOO much more could come of less pay for him. It's gross.
<br />
<br />And that is why I do NOT support the CFF fundraising. I still CF fundraise, but my $$$$ dollars go to my organization (of which BTW I do NOT pay myself, and come out of pocket about $3500 per year, Id like to see the CEO of CFF do that!!!), and to other organizations that provide DIRECT FINANCIAL SUPPORT to CFers. The CFF is money hungry, that is my take on it.
<P>I'm really new to this, having been dx in 1987, but it is very difficult for me to look at the scope of the wofk of the CFF and not be impressed.</P>
<P> </P>
<P>In a perfect world would the CFF be better, of course but this is not a perfect world. </P>
<P> </P>
<P>Julie, I love reading what you post and I respect you alot but I suggest that you give the CFF some slack.</P>
<P> </P>
<P>Bill</P>
<P> </P>
<P>In a perfect world would the CFF be better, of course but this is not a perfect world. </P>
<P> </P>
<P>Julie, I love reading what you post and I respect you alot but I suggest that you give the CFF some slack.</P>
<P> </P>
<P>Bill</P>
<P>I'm really new to this, having been dx in 1987, but it is very difficult for me to look at the scope of the wofk of the CFF and not be impressed.</P>
<P></P>
<P>In a perfect world would the CFF be better, of course but this is not a perfect world. </P>
<P></P>
<P>Julie, I love reading what you post and I respect you alot but I suggest that you give the CFF some slack.</P>
<P></P>
<P>Bill</P>
<P></P>
<P>In a perfect world would the CFF be better, of course but this is not a perfect world. </P>
<P></P>
<P>Julie, I love reading what you post and I respect you alot but I suggest that you give the CFF some slack.</P>
<P></P>
<P>Bill</P>
<P>I'm really new to this, having been dx in 1987, but it is very difficult for me to look at the scope of the wofk of the CFF and not be impressed.</P>
<P></P>
<P>In a perfect world would the CFF be better, of course but this is not a perfect world. </P>
<P></P>
<P>Julie, I love reading what you post and I respect you alot but I suggest that you give the CFF some slack.</P>
<P></P>
<P>Bill</P>
<P></P>
<P>In a perfect world would the CFF be better, of course but this is not a perfect world. </P>
<P></P>
<P>Julie, I love reading what you post and I respect you alot but I suggest that you give the CFF some slack.</P>
<P></P>
<P>Bill</P>
mamaScarlett
Active member
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>
mamaScarlett
Active member
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>