Very upset with CFF letter- lies..

[mneville]

The CFF called me and asked if they could use Aidan's picture for an end of the year newsletter. I said sure and asked if they could send me a copy of whatever it was so I could see his cute little face published.

Big mistake. The letter came the day before Thanksgiving and I was horrified. There were pics of 5 or so kids ages 2,2,5,6,15 and 18 or something like that. There were more young kids than teens. The letter was asking people in NJ for a year end donation. But there was a blatant lie in the letter. It said something to the effect of "When these children were diagnosed, doctors told their parents they may not live to graduate high school."

I found that very distasteful as when Aidan was diagnosed, the age was 32 (double what the letter said). I understand that they want to raise money but don't do it with lies! Who knows what else they lie about? Any thoughts? Should I contact them?

Megan

 

[mneville]

The CFF called me and asked if they could use Aidan's picture for an end of the year newsletter. I said sure and asked if they could send me a copy of whatever it was so I could see his cute little face published.

Big mistake. The letter came the day before Thanksgiving and I was horrified. There were pics of 5 or so kids ages 2,2,5,6,15 and 18 or something like that. There were more young kids than teens. The letter was asking people in NJ for a year end donation. But there was a blatant lie in the letter. It said something to the effect of "When these children were diagnosed, doctors told their parents they may not live to graduate high school."

I found that very distasteful as when Aidan was diagnosed, the age was 32 (double what the letter said). I understand that they want to raise money but don't do it with lies! Who knows what else they lie about? Any thoughts? Should I contact them?

Megan

 

[mneville]

The CFF called me and asked if they could use Aidan's picture for an end of the year newsletter. I said sure and asked if they could send me a copy of whatever it was so I could see his cute little face published.

Big mistake. The letter came the day before Thanksgiving and I was horrified. There were pics of 5 or so kids ages 2,2,5,6,15 and 18 or something like that. There were more young kids than teens. The letter was asking people in NJ for a year end donation. But there was a blatant lie in the letter. It said something to the effect of "When these children were diagnosed, doctors told their parents they may not live to graduate high school."

I found that very distasteful as when Aidan was diagnosed, the age was 32 (double what the letter said). I understand that they want to raise money but don't do it with lies! Who knows what else they lie about? Any thoughts? Should I contact them?

Megan

 

[NoExcuses]

Get over it. They're trying to raise money.

The 18 year old was probably told he wouldn't graduate high school.

 

[NoExcuses]

Get over it. They're trying to raise money.

The 18 year old was probably told he wouldn't graduate high school.

 

[NoExcuses]

Get over it. They're trying to raise money.

The 18 year old was probably told he wouldn't graduate high school.

 

[JazzysMom]

Its a type of marketing strategie.....if you feel the need to contact them do so. Unfortunately sad stories work better!

 

[JazzysMom]

Its a type of marketing strategie.....if you feel the need to contact them do so. Unfortunately sad stories work better!

 

[JazzysMom]

Its a type of marketing strategie.....if you feel the need to contact them do so. Unfortunately sad stories work better!

 

[mneville]

Yeah he probably was. But the five other kids were certainly not told that.It just makes me wonder what other exaggerations they tell. I raise $25,000 each year for Great Strides but I would never lie about the stats for more money. I think it is in poor taste. I've gotten over it but I did not give permission for my son's picture to be sent out with a stack of lies.

By the way Amy - I know you use NAC (?) after seeing Warwick. He mentioned it to me too. Where do I get it? Is is prescription? Thanks

Megan

 

[mneville]

Yeah he probably was. But the five other kids were certainly not told that.It just makes me wonder what other exaggerations they tell. I raise $25,000 each year for Great Strides but I would never lie about the stats for more money. I think it is in poor taste. I've gotten over it but I did not give permission for my son's picture to be sent out with a stack of lies.

By the way Amy - I know you use NAC (?) after seeing Warwick. He mentioned it to me too. Where do I get it? Is is prescription? Thanks

Megan

 

[mneville]

Yeah he probably was. But the five other kids were certainly not told that.It just makes me wonder what other exaggerations they tell. I raise $25,000 each year for Great Strides but I would never lie about the stats for more money. I think it is in poor taste. I've gotten over it but I did not give permission for my son's picture to be sent out with a stack of lies.

By the way Amy - I know you use NAC (?) after seeing Warwick. He mentioned it to me too. Where do I get it? Is is prescription? Thanks

Megan

 

[NoExcuses]

I got mine at Whole Foods. It's an herb so its not prescription.

N-Acetylecysteine.

I absolutely love it and it has made a big difference in my health.

 

[NoExcuses]

I got mine at Whole Foods. It's an herb so its not prescription.

N-Acetylecysteine.

I absolutely love it and it has made a big difference in my health.

 

[NoExcuses]

I got mine at Whole Foods. It's an herb so its not prescription.

N-Acetylecysteine.

I absolutely love it and it has made a big difference in my health.

 

[wanderlost]

That would infuriate me too - I hate the Cf pity thing, it's one of the reasons that I do not like to tell people I have Cf, and something like that is just perpetuating that idea. Now don't get me wrong, Cf is a horrible disease and it kills a lot of people way before their time, but I prefer having a postive outlook on the whole thing. I'd rather, when someone knows I have Cf have them say, "hey aren't people with that disease living longer than ever now?" rather than, "I heard kids die from that before they reach high school." But sadly, as was stated before, they do whatever works to get money.

 

[wanderlost]

That would infuriate me too - I hate the Cf pity thing, it's one of the reasons that I do not like to tell people I have Cf, and something like that is just perpetuating that idea. Now don't get me wrong, Cf is a horrible disease and it kills a lot of people way before their time, but I prefer having a postive outlook on the whole thing. I'd rather, when someone knows I have Cf have them say, "hey aren't people with that disease living longer than ever now?" rather than, "I heard kids die from that before they reach high school." But sadly, as was stated before, they do whatever works to get money.

 

[wanderlost]

That would infuriate me too - I hate the Cf pity thing, it's one of the reasons that I do not like to tell people I have Cf, and something like that is just perpetuating that idea. Now don't get me wrong, Cf is a horrible disease and it kills a lot of people way before their time, but I prefer having a postive outlook on the whole thing. I'd rather, when someone knows I have Cf have them say, "hey aren't people with that disease living longer than ever now?" rather than, "I heard kids die from that before they reach high school." But sadly, as was stated before, they do whatever works to get money.

 

[zoe4life]

The way I look at this is...the CFF is the only organization raising money to very actively find a cure. They use at least 90 cents out of every dollar strictly for research to cure this damn disease!! The highest percentage out there!!! For your disease!! Also, from how it has been explained to me, only 50% of cf patients live to be 18 years old, then, they have a life expectancy of 36.8 years.
Soooo, let them raise their money!!! We need a cure!!!!!!!!!!
I agree with the other statements...sad stories raise more money. That is a fact.

Jada
Zoe's mom

 

[zoe4life]

The way I look at this is...the CFF is the only organization raising money to very actively find a cure. They use at least 90 cents out of every dollar strictly for research to cure this damn disease!! The highest percentage out there!!! For your disease!! Also, from how it has been explained to me, only 50% of cf patients live to be 18 years old, then, they have a life expectancy of 36.8 years.
Soooo, let them raise their money!!! We need a cure!!!!!!!!!!
I agree with the other statements...sad stories raise more money. That is a fact.

Jada
Zoe's mom