Very upset with CFF letter- lies..

[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

 

[kybert]

sorry but that is the only way to grab the general publics attention. besides, children are still dying young from cf so really, it isnt a lie. try sugarcoated fairlyand advertising and see how far it gets you.

 

[kybert]

sorry but that is the only way to grab the general publics attention. besides, children are still dying young from cf so really, it isnt a lie. try sugarcoated fairlyand advertising and see how far it gets you.

 

[kybert]

sorry but that is the only way to grab the general publics attention. besides, children are still dying young from cf so really, it isnt a lie. try sugarcoated fairlyand advertising and see how far it gets you.

 

[onlyoneloveinmylife]

I don't care for the lies too much either. but unfortunately people do respond to sad stories more than other stories. if this is what it takes to get money for CF research then so be it.

 

[onlyoneloveinmylife]

I don't care for the lies too much either. but unfortunately people do respond to sad stories more than other stories. if this is what it takes to get money for CF research then so be it.

 

[onlyoneloveinmylife]

I don't care for the lies too much either. but unfortunately people do respond to sad stories more than other stories. if this is what it takes to get money for CF research then so be it.

 

[Brad]

Hello Megan

I don't agree with them misleading the public either.

I was Dx in 1965, My Mother was told I would not
make it to 18, But that was 41 years ago.
They also wanted to print a picture of my younger sister
and myself on a poster. My Mom wouldn't let them.

 

[Brad]

Hello Megan

I don't agree with them misleading the public either.

I was Dx in 1965, My Mother was told I would not
make it to 18, But that was 41 years ago.
They also wanted to print a picture of my younger sister
and myself on a poster. My Mom wouldn't let them.

 

[Brad]

Hello Megan

I don't agree with them misleading the public either.

I was Dx in 1965, My Mother was told I would not
make it to 18, But that was 41 years ago.
They also wanted to print a picture of my younger sister
and myself on a poster. My Mom wouldn't let them.

 

[perky79]

Yeah I would feel a little used if they were to have dont that too me. Sadly I think Im gonna play the role of the swiss and take no side.

 

[perky79]

Yeah I would feel a little used if they were to have dont that too me. Sadly I think Im gonna play the role of the swiss and take no side.

 

[perky79]

Yeah I would feel a little used if they were to have dont that too me. Sadly I think Im gonna play the role of the swiss and take no side.

 

[blackchameleon]

i understand why the sympathy vote sometimes is tempting to use to attract funds, however what about the people with cf who start dating people and those people look up websites for cf and see many disturbing and distorted storys about cf and its life expectancy, poor quality of life etc?? i know of stories where these distorted views frightened people away. cf is not for the faint hearted however we cfers make excellent partners, we are caring, devoted, intelligent, extra-ordinarily good looking, absolutely creative and passionate mind blowers between the sheets and of course our witiness is second to none, not to mention the exciting ideas our bipolar type brains generate. yep marry a cfer and life takes on an exciting new dimension, spinning in wonderously different realm to the boring normal. date a cfer today.
now that would be a better website for prospective boyfriends/girlfriends to read wouldnt it? BC

 

[blackchameleon]

i understand why the sympathy vote sometimes is tempting to use to attract funds, however what about the people with cf who start dating people and those people look up websites for cf and see many disturbing and distorted storys about cf and its life expectancy, poor quality of life etc?? i know of stories where these distorted views frightened people away. cf is not for the faint hearted however we cfers make excellent partners, we are caring, devoted, intelligent, extra-ordinarily good looking, absolutely creative and passionate mind blowers between the sheets and of course our witiness is second to none, not to mention the exciting ideas our bipolar type brains generate. yep marry a cfer and life takes on an exciting new dimension, spinning in wonderously different realm to the boring normal. date a cfer today.
now that would be a better website for prospective boyfriends/girlfriends to read wouldnt it? BC

 

[blackchameleon]

i understand why the sympathy vote sometimes is tempting to use to attract funds, however what about the people with cf who start dating people and those people look up websites for cf and see many disturbing and distorted storys about cf and its life expectancy, poor quality of life etc?? i know of stories where these distorted views frightened people away. cf is not for the faint hearted however we cfers make excellent partners, we are caring, devoted, intelligent, extra-ordinarily good looking, absolutely creative and passionate mind blowers between the sheets and of course our witiness is second to none, not to mention the exciting ideas our bipolar type brains generate. yep marry a cfer and life takes on an exciting new dimension, spinning in wonderously different realm to the boring normal. date a cfer today.
now that would be a better website for prospective boyfriends/girlfriends to read wouldnt it? BC

 

[Rutgersnyy]

If you want truth, you would include someone like me in that lineup.

23 years old, never been sick, work out every day, no breathing problems, no weight problems.

But if people looked at me, they would wonder what's the big deal w/ CF.

 

[Rutgersnyy]

If you want truth, you would include someone like me in that lineup.

23 years old, never been sick, work out every day, no breathing problems, no weight problems.

But if people looked at me, they would wonder what's the big deal w/ CF.

 

[Rutgersnyy]

If you want truth, you would include someone like me in that lineup.

23 years old, never been sick, work out every day, no breathing problems, no weight problems.

But if people looked at me, they would wonder what's the big deal w/ CF.

 

[mneville]

I appreciate the feedback. Of course, I know sad stories sell. When I write my Great Strides letter, it is very emotional and discusses the sad realities of the disease. I was just taken back that my son's picture was associated with lies. People who get the letter and recognize my son will be confused as I have always used the real stats. They won't know who to believe.

Megan