Re: CF Number (long)

March 8, 2004

To say the least! Love to you, Hal--have a good vacation, and love to

Phyllis as well, n

CF Number (long)

The number of persons with CF matters for example, for obtaining the category

of " orphan disease, " which entitles funds from the federal government for

research purposes. My sister died at age 20 from the effects of CF, and as I am

age 73 (April) we average out to a survival age of 46 1/2 years. A bit silly.

The CFF survives from donations from those who are made aware of the disease by

the CFF. Their salaries and expenses, as with any organization categorized as

" non profit " for tax purposes come from those donations. Most of the donations

are raised locally by hard working unpaid volunteers associated in one way or

another with CF, and go to the CFF for distribution. The CFF alone determines

who gets the money for research or whatever they decide. I have been affiliated

with the CFF both on the state and national levels for thirty years and as they

are the only organization dedicated to the distribution of information about CF

on a national basis, we must rely on them to be factual. It goes without saying,

as most babies are not tested for CF, nor can there be an accurate count of

those with CF who do not attend clinics recognized by the CFF, the number of

30,000 is at most a conservative guess. It has only been recently that non

Caucasians in the U.S. have been diagnosed with CF. Non whites and poor whites

in the U.S. have at best poor access to health care. That could alone account

for the lack of valid statistics. Certainly we should understand there are

people with cancer and other diseases that have not been diagnosed, and many

have died having gone undiagnosed. Statisticians can make educated guesses, and

that is the best we can expect. However, when the population continues to grow

at a particular rate, and the number given out by the CFF for those with CF

remains fairly constant, it is not wrong to question their statistics or their

motives. By setting an age level of mortality at little over two years from what

it was perhaps ten years ago, you can imagine how parents feel when their baby

is diagnosed or that someone who reaches 29 years old begins to fear the worst.

I would like to be informed if there is one antibiotic or other medication in

general use by those who have CF that was developed as a result of money granted

solely by the CFF. By not publicizing the fact that there are hundreds if not

thousands of persons with CF surviving beyond fifty years old, the CFF is being

disingenuous. Hal

March 8, 2004

My 2 cents:

I think, even if the number of people in the U.S. with CF was

significantly larger, it would still qualify as " orphan disease " .

I mean, we're not even talking half a million. I don't know what the

magical number is to qualify, but I am guessing we would still make

it. Easily.

I also think it would be great to research the real number, but I

can't imagine how. And, NO, I am not going to volunteer to do it!

I personally don't care if we say how many there are in our awareness

brochures. Maybe we should say " at least 35,000 " or something like

that. For awareness purposes, and senate votes, and all that, the

larger the number the more in our favor it would be. But I don't see

the sense of starting a campaign that says " the number you have been

given is wrong, but we don't know what the correct number is " . What

is the point?

Regarding the median age, not to be a spoil sport, but look at how

many people are on the email support lists for example. 700? How many

are over 32? (Or writing for someone over 32?) Probably not more than

half. Which, I think, explains the 32-year median thing.

But I could be wrong. This is just my outlook.

I wish the 32 year thing was an exaggeration, but in my personal

experience (losing friends and acquaintances to CF) it unfortunately

has been a higher number than many of these dear people have reached.

Whatever, let us enjoy the days we have ahead of us, regardless of

the number. And let's be grateful for them.

Lenora

>To say the least! Love to you, Hal--have a good vacation, and love to

>Phyllis as well, n

> CF Number (long)

>

> The number of persons with CF matters for example, for obtaining

>the category of " orphan disease, " which entitles funds from the

>federal government for research purposes. My sister died at age 20

>from the effects of CF, and as I am age 73 (April) we average out to

>a survival age of 46 1/2 years. A bit silly. The CFF survives from

>donations from those who are made aware of the disease by the CFF.

>Their salaries and expenses, as with any organization categorized as

> " non profit " for tax purposes come from those donations. Most of

>the donations are raised locally by hard working unpaid volunteers

>associated in one way or another with CF, and go to the CFF for

>distribution. The CFF alone determines who gets the money for

>research or whatever they decide. I have been affiliated with the

>CFF both on the state and national levels for thirty years and as

>they are the only organization dedicated to the distribution of

>information about CF on a national basis, we must rely on them to be

>factual. It goes without saying, as most babies are not tested for

>CF, nor can there be an accurate count of those with CF who do not

>attend clinics recognized by the CFF, the number of 30,000 is at

>most a conservative guess. It has only been recently that non

>Caucasians in the U.S. have been diagnosed with CF. Non whites and

>poor whites in the U.S. have at best poor access to health care.

>That could alone account for the lack of valid statistics. Certainly

>we should understand there are people with cancer and other diseases

>that have not been diagnosed, and many have died having gone

>undiagnosed. Statisticians can make educated guesses, and that is

>the best we can expect. However, when the population continues to

>grow at a particular rate, and the number given out by the CFF for

>those with CF remains fairly constant, it is not wrong to question

>their statistics or their motives. By setting an age level of

>mortality at little over two years from what it was perhaps ten

>years ago, you can imagine how parents feel when their baby is

>diagnosed or that someone who reaches 29 years old begins to fear

>the worst. I would like to be informed if there is one antibiotic or

>other medication in general use by those who have CF that was

>developed as a result of money granted solely by the CFF. By not

>publicizing the fact that there are hundreds if not thousands of

>persons with CF surviving beyond fifty years old, the CFF is being

>disingenuous. Hal

>

March 9, 2004

Hal,

I wish that I was going with you! I've never been to Hawaii.

Gale

> To say the least! Love to you, Hal--have a good vacation, and love

to

> Phyllis as well, n

> CF Number (long)

>

> The number of persons with CF matters for example, for obtaining

the category of " orphan disease, " which entitles funds from the

federal government for research purposes. My sister died at age 20

from the effects of CF, and as I am age 73 (April) we average out to

a survival age of 46 1/2 years. A bit silly. The CFF survives from

donations from those who are made aware of the disease by the CFF.

Their salaries and expenses, as with any organization categorized

as " non profit " for tax purposes come from those donations. Most of

the donations are raised locally by hard working unpaid volunteers

associated in one way or another with CF, and go to the CFF for

distribution. The CFF alone determines who gets the money for

research or whatever they decide. I have been affiliated with the

CFF both on the state and national levels for thirty years and as

they are the only organization dedicated to the distribution of

information about CF on a national basis, we must rely on them to be

factual. It goes without saying, as most babies are not tested for

CF, nor can there be an accurate count of those with CF who do not

attend clinics recognized by the CFF, the number of 30,000 is at most

a conservative guess. It has only been recently that non Caucasians

in the U.S. have been diagnosed with CF. Non whites and poor whites

in the U.S. have at best poor access to health care. That could alone

account for the lack of valid statistics. Certainly we should

understand there are people with cancer and other diseases that have

not been diagnosed, and many have died having gone undiagnosed.

Statisticians can make educated guesses, and that is the best we can

expect. However, when the population continues to grow at a

particular rate, and the number given out by the CFF for those with

CF remains fairly constant, it is not wrong to question their

statistics or their motives. By setting an age level of mortality at

little over two years from what it was perhaps ten years ago, you can

imagine how parents feel when their baby is diagnosed or that someone

who reaches 29 years old begins to fear the worst. I would like to be

informed if there is one antibiotic or other medication in general

use by those who have CF that was developed as a result of money

granted solely by the CFF. By not publicizing the fact that there are

hundreds if not thousands of persons with CF surviving beyond fifty

years old, the CFF is being disingenuous. Hal

>

March 9, 2004

Well, the CFF itself has often said 60,000. which is still orphan disease,

but is a greater fund-raising base. The problem is that each family with cystic

fibrosis has NO IDEA that there are others and that they are not alone, in

coping, in fund-faising, in awareness! n