Very upset with CFF letter- lies..

M

mneville

Guest
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
 
M

mneville

Guest
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
 
L

LisaV

New member
I am most concerned to read that the CFF is using these lies and the pity it brings out to raise money.
I am reminded of the Jerry Lewis marathon and it's emphasis on childhood death.
And think of what harm hearing or reading that does the very people it is supposed to help.
Read Harriet McBryde Johnson about this at <a target=_blank class=ftalternatingbarlinklarge href="http://www.newmobility.com/review_article.cfm?id=198&action=browse">http://www.newmobility.com/rev...m?id=198&action=browse</a> .

She writes:
" I studied the telethon and tried to understand its peculiar power. It spewed out the same old messages--"killer disease," "life ebbing away," "before it's too late." As I heard the death sentence pronounced on another generation of children, I wondered how many had actually been killed by it. How many had suffered pneumonia without vigilant parents or a crazy German doctor with pea soup? How many had died for lack of a reason, when a reason was needed in the middle of the night, to hang on to life? Worst of all, how many had lived and died without finding meaning? How many had failed to value their own lives?"
"I joined the telethon protest and opposed physician-assisted suicide. I wanted people to know our culture is playing fast and loose with the facts. While anyone may die young, it's not something you can count on. You have to be prepared to survive."

We want everyone with CF to "value their own lives" and to "be prepared to survive".

If the method used to raise money causes folks NOT to do that can it possibly be worth the research gained?
 
L

LisaV

New member
I am most concerned to read that the CFF is using these lies and the pity it brings out to raise money.
I am reminded of the Jerry Lewis marathon and it's emphasis on childhood death.
And think of what harm hearing or reading that does the very people it is supposed to help.
Read Harriet McBryde Johnson about this at <a target=_blank class=ftalternatingbarlinklarge href="http://www.newmobility.com/review_article.cfm?id=198&action=browse">http://www.newmobility.com/rev...m?id=198&action=browse</a> .

She writes:
" I studied the telethon and tried to understand its peculiar power. It spewed out the same old messages--"killer disease," "life ebbing away," "before it's too late." As I heard the death sentence pronounced on another generation of children, I wondered how many had actually been killed by it. How many had suffered pneumonia without vigilant parents or a crazy German doctor with pea soup? How many had died for lack of a reason, when a reason was needed in the middle of the night, to hang on to life? Worst of all, how many had lived and died without finding meaning? How many had failed to value their own lives?"
"I joined the telethon protest and opposed physician-assisted suicide. I wanted people to know our culture is playing fast and loose with the facts. While anyone may die young, it's not something you can count on. You have to be prepared to survive."

We want everyone with CF to "value their own lives" and to "be prepared to survive".

If the method used to raise money causes folks NOT to do that can it possibly be worth the research gained?
 
L

LisaV

New member
I am most concerned to read that the CFF is using these lies and the pity it brings out to raise money.
I am reminded of the Jerry Lewis marathon and it's emphasis on childhood death.
And think of what harm hearing or reading that does the very people it is supposed to help.
Read Harriet McBryde Johnson about this at <a target=_blank class=ftalternatingbarlinklarge href="http://www.newmobility.com/review_article.cfm?id=198&action=browse">http://www.newmobility.com/rev...m?id=198&action=browse</a> .

She writes:
" I studied the telethon and tried to understand its peculiar power. It spewed out the same old messages--"killer disease," "life ebbing away," "before it's too late." As I heard the death sentence pronounced on another generation of children, I wondered how many had actually been killed by it. How many had suffered pneumonia without vigilant parents or a crazy German doctor with pea soup? How many had died for lack of a reason, when a reason was needed in the middle of the night, to hang on to life? Worst of all, how many had lived and died without finding meaning? How many had failed to value their own lives?"
"I joined the telethon protest and opposed physician-assisted suicide. I wanted people to know our culture is playing fast and loose with the facts. While anyone may die young, it's not something you can count on. You have to be prepared to survive."

We want everyone with CF to "value their own lives" and to "be prepared to survive".

If the method used to raise money causes folks NOT to do that can it possibly be worth the research gained?
 
N

NoExcuses

New member
if your view as a CFer of your own survival is dependent upon the fundraising messages of the CFF, then you need to do a serious gut check.

optimism, being prepared to survive, and the ability to FIGHT ON comes from within. not some fundraising campaign.

is anyone responsible for their own thoughts anymore? are we simply victims of what others tell us how to behave or what to believe?

facts should guide us in what to believe. not a fundraising brochure. aren't we all smarter than that?????? i would hope so.

to answer your question, LisaV, yes, it's worth the research gained. don't be rediculous.
 
N

NoExcuses

New member
if your view as a CFer of your own survival is dependent upon the fundraising messages of the CFF, then you need to do a serious gut check.

optimism, being prepared to survive, and the ability to FIGHT ON comes from within. not some fundraising campaign.

is anyone responsible for their own thoughts anymore? are we simply victims of what others tell us how to behave or what to believe?

facts should guide us in what to believe. not a fundraising brochure. aren't we all smarter than that?????? i would hope so.

to answer your question, LisaV, yes, it's worth the research gained. don't be rediculous.
 
N

NoExcuses

New member
if your view as a CFer of your own survival is dependent upon the fundraising messages of the CFF, then you need to do a serious gut check.

optimism, being prepared to survive, and the ability to FIGHT ON comes from within. not some fundraising campaign.

is anyone responsible for their own thoughts anymore? are we simply victims of what others tell us how to behave or what to believe?

facts should guide us in what to believe. not a fundraising brochure. aren't we all smarter than that?????? i would hope so.

to answer your question, LisaV, yes, it's worth the research gained. don't be rediculous.
 
M

melleemac

Guest
I agree that yes, sad stories do raise money and awareness. But also the cruel hard fact is that there are still kids dying from c f before they graduate high school, so yes it is misleading but its not a full blown lie either!
Mel
 
M

melleemac

Guest
I agree that yes, sad stories do raise money and awareness. But also the cruel hard fact is that there are still kids dying from c f before they graduate high school, so yes it is misleading but its not a full blown lie either!
Mel
 
M

melleemac

Guest
I agree that yes, sad stories do raise money and awareness. But also the cruel hard fact is that there are still kids dying from c f before they graduate high school, so yes it is misleading but its not a full blown lie either!
Mel
 
M

mum2kj

New member
No it's not all a lie, My first contact with a cfer was a 6yr old girl. She died at the age of 7.
I was sooo scared after this for KJ and all I wanted to do was try to get her past age 7. Well she has made it 7 years past that (thankfully)

I think they should show the all round view of c/f. babies, preteens, teens and adults. As it is now an all age illness.
 
M

mum2kj

New member
No it's not all a lie, My first contact with a cfer was a 6yr old girl. She died at the age of 7.
I was sooo scared after this for KJ and all I wanted to do was try to get her past age 7. Well she has made it 7 years past that (thankfully)

I think they should show the all round view of c/f. babies, preteens, teens and adults. As it is now an all age illness.
 
M

mum2kj

New member
No it's not all a lie, My first contact with a cfer was a 6yr old girl. She died at the age of 7.
I was sooo scared after this for KJ and all I wanted to do was try to get her past age 7. Well she has made it 7 years past that (thankfully)

I think they should show the all round view of c/f. babies, preteens, teens and adults. As it is now an all age illness.
 
L

Landy

New member
They should have said "When <i>some</i> of these kids were born their parents were told...."
Also, why not state that thanks to money given/spent on research, tremendous strides have been made in the fight against CF, but much more needs still needs to be done or something to that effect? I suppose not dramatic enough....
 
L

Landy

New member
They should have said "When <i>some</i> of these kids were born their parents were told...."
Also, why not state that thanks to money given/spent on research, tremendous strides have been made in the fight against CF, but much more needs still needs to be done or something to that effect? I suppose not dramatic enough....
 
L

Landy

New member
They should have said "When <i>some</i> of these kids were born their parents were told...."
Also, why not state that thanks to money given/spent on research, tremendous strides have been made in the fight against CF, but much more needs still needs to be done or something to that effect? I suppose not dramatic enough....
 
K

kybert

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rutgersnyy</b></i>

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.</end quote></div>


i sure hope you arent implying that most 23 year old cf patients are just like you. please explain!
 
K

kybert

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rutgersnyy</b></i>

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.</end quote></div>


i sure hope you arent implying that most 23 year old cf patients are just like you. please explain!
 
K

kybert

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rutgersnyy</b></i>

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.</end quote></div>


i sure hope you arent implying that most 23 year old cf patients are just like you. please explain!
 
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