Re: I cant believe my ears

[Guest guest]

I hear your frustrations. I was told by the owner of a company, through my

fundraising efforts, that because my child's mind is ok and she can walk and

talk she is fine. What a crock!!!! I agree there needs to be something we

can do to raise more public awareness about CF. That way people will at

least have general idea ofwhat we are talking about when we say CF.

Mother of 11 mo wcf

[Guest guest]

,

One fact is that between 85 to 95 cents of every dollar raised for CF research

actually goes to research, this is one reason for the quick advances over the

last 10-15 years... the CFF does not spend MEGA BUCKS to do telethons because

then there wouldn't be so much to go to research... If you want to catch people,

give them the above fact... the CFF is one of the top ten charities to donate

to, there is more research for each dollar donated, that is one reason why Bill

Gates donated 20 million (or was it 25 million) to the CFF. Get some brochures

from your local CF Foundation office and pick a time when your office is not

raising money for another charity, especially during the area " Great Strides "

this is our annual fund raising time. If there isn't one near you, contact the

CFF office nearest you and help organize one. Be patient and explain what CF is

and don't sugar coat it. I give details and facts that eventhough the " median

life expectancy " is 33 years old there are still way too many children and young

adults dying earlier due to the lung infections and malnutrition. This will get

them. I don't know if this helps you any, but I would rather have the money go

toward research than to go on a telethon.

Take care and keep it up, you are doing a great job at educating those around

you.

Daelynn

[Guest guest]

,

I find it really frustrating about the lack of knowledge about cf.

Sometimes you tell people and they say oh. but you know they have no idea,

so now when they say that I aske them do they know what it is. And I also

get frustrated how people say 'but she looks so well'. Maybe if she had two

heads or something they'd think she was ill.

Re: I cant believe my ears

> I hear your frustrations. I was told by the owner of a company, through

my

> fundraising efforts, that because my child's mind is ok and she can walk

and

> talk she is fine. What a crock!!!! I agree there needs to be something

we

> can do to raise more public awareness about CF. That way people will at

> least have general idea ofwhat we are talking about when we say CF.

>

>

> Mother of 11 mo wcf

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

I agree , we need to make CF more publicly known. Where are you from?

Mother of 11 mo wcf

[Guest guest]

I can feel your hurt and frustration straight thru the puter.

It gets me so mad (and I'm sure everyone will agree) that people think so little

of the disease. You just want to give them a Dope slap!

I was just thinking the other day while in the supermarket, why there is no

collection cans for CF, no words from the cashier, " do you want to donate a $1

to CF " , no shamrocks to write your name on to hang on the wall, ect...

Why the heck is that!!!!!

Why does Jerry have his own telethon and we don't???? What makes their

disease far greater publicized,educated and admired????

I'm all for making waves and trying to start some type of national awareness for

CF.

Ofcourse I'm not a movie star, notarized person, or a millionaire, but why do we

have to be inorder to get funds for a disease that is killing our kids and loved

ones????

Of the soap box I fall,

Stein....mom to CF (11 mo) & Tori wo/Cf (3 1/2 yr)

---- Original Message -----

From: jennifer bell

To: cfparents

Sent: Friday, May 04, 2001 8:35 PM

Subject: I cant believe my ears

I have been trying get some donations for the walk

this month at work, and I am having a tough time

because my company is now raising money for special

olympics. I'm outnumbers 100 to 1. When I mentioned

to someone at work today how it upsets my that

something like CF is thrown on the back burner and is

not so nationally recognized, that even my company (A

MAJOR life insurance co) will not publicly support it.

Anyway the reply to my comments was " But CF isn't

deadly " . Huh?? Am I missing something? Did somebody

at the clinic lie to me? Am I doing treatments for

nothing?? I wanted to laugh so bad. Thatis EXACTLY

the attitude people around me have. They don't know

what it is (though I truly do try to educate them).

The only way I have been able to make them stop and

think about it is by showing them pictures of my

babies getting their treatments. That ALWAYS brings

somebody to tears. I don't do it to be evil, I do it

to bring a point across. That CF IS a big deal. I

mean, MD has their own telethon, Easter Seals has

theirs, the childrens medical centers has theirs, the

make a wish foundation has theirs... where is ours??

It's funny ,considering I live in SouthWest Ohio, the

first thing you hear when you say your kids have CF is

" OH, isn't that what Boomer Esaison's kid has? " (By

the way, his salsa that supports the CFF is GREAT, and

my grocery stores don't carry it anymore. I don't

know if its because its off the market or because

nobody bought it. I think I was the only one) And

then I say " Yes it is " and then they respond " Now what

exactly is that? " I think we should just pick a

holiday and bore people to death for 24 hours on tv

with a telethon...explain to the rest of the world

what this disease is, what it does to the human body,

and what measures must be taken to stay alive... what

the heck.. it works for others. Sorry, I am FULL

of dry humor today. This whole thing at work has just

made me flustered.

__________________________________________________

[Guest guest]

CF AWARENESS WEEK IS OCTOBER (third week ) . this year. It was established 2

years ago and sanctioned by our CONGRESS It is proclaimed !!! YEAH!!

Make sure to plan things in your community. call your radio stations.local

TV, etc. have them make announcements. Send them a flyer about CF . So they

know what to say about it . Make speeches, talks ,etc.

YEAH!! We have a day to tell all. No telethon's yet that I know of except,

Kathleen Shores does one in Aulander NC. I don't know the date. Her son is

on the list I think too His name is DONNIE SHORES. He is deaf but does soooo

many things to AWARE folks about CF Kathleen is 76 years old this year

too!!!

I cant believe my ears

I have been trying get some donations for the walk

this month at work, and I am having a tough time

because my company is now raising money for special

olympics. I'm outnumbers 100 to 1. When I mentioned

to someone at work today how it upsets my that

something like CF is thrown on the back burner and is

not so nationally recognized, that even my company (A

MAJOR life insurance co) will not publicly support it.

Anyway the reply to my comments was " But CF isn't

deadly " . Huh?? Am I missing something? Did somebody

at the clinic lie to me? Am I doing treatments for

nothing?? I wanted to laugh so bad. Thatis EXACTLY

the attitude people around me have. They don't know

what it is (though I truly do try to educate them).

The only way I have been able to make them stop and

think about it is by showing them pictures of my

babies getting their treatments. That ALWAYS brings

somebody to tears. I don't do it to be evil, I do it

to bring a point across. That CF IS a big deal. I

mean, MD has their own telethon, Easter Seals has

theirs, the childrens medical centers has theirs, the

make a wish foundation has theirs... where is ours??

It's funny ,considering I live in SouthWest Ohio, the

first thing you hear when you say your kids have CF is

" OH, isn't that what Boomer Esaison's kid has? " (By

the way, his salsa that supports the CFF is GREAT, and

my grocery stores don't carry it anymore. I don't

know if its because its off the market or because

nobody bought it. I think I was the only one) And

then I say " Yes it is " and then they respond " Now what

exactly is that? " I think we should just pick a

holiday and bore people to death for 24 hours on tv

with a telethon...explain to the rest of the world

what this disease is, what it does to the human body,

and what measures must be taken to stay alive... what

the heck.. it works for others. Sorry, I am FULL

of dry humor today. This whole thing at work has just

made me flustered.

__________________________________________________

[Guest guest]

We live in Massachusetts. And U?

Stein

Re: I cant believe my ears

I agree , we need to make CF more publicly known. Where are you from?

Mother of 11 mo wcf

[Guest guest]

Hi ,

don't know whether this may comfort you, but whenever someone doesn't know

anything about CF I keep telling to myself how little I know about other

diseases. What do we know about say 's disease, Marfan's syndrome or

muscular dystrophia. Are they genetic, are they deadly, is there a cure? Do they

occur more often than CF or are they rare? I am thankful whenever someone knows

about Fiona's disease and even took the time to educate him/herself about it.

But I won't blame anyone for not knowing about it. My cousin's daughter with CF

is 17 and I freely admit that for the first thirteen years of her life I only

knew that she had some weird digestive problems.

Bye

Torsten, dad of Fiona 4wcf

e-mail: aberdeen95@...

[Guest guest]

Hi

I live in Green Bay, Wisconsin so I guess that shoots the idea of trying to

organize something. Oh well, at least we can keep in touch via internet.

Take Care

Mother of 11 mo wcf

[Guest guest]

CF AWARENESS WEEK IS OCTOBER (third week ) . this year. It was established 2

years ago and sanctioned by our CONGRESS It is proclaimed !!! YEAH!!

Make sure to plan things in your community. call your radio stations.local

TV, etc. have them make announcements. Send them a flyer about CF . So they

know what to say about it . Make speeches, talks ,etc.

YEAH!! We have a day to tell all. No telethon's yet that I know of except,

Kathleen Shores does one in Aulander NC. I don't know the date. Her son is

on the list I think too His name is DONNIE SHORES. He is deaf but does soooo

many things to AWARE folks about CF Kathleen is 76 years old this year

too!!!

I cant believe my ears

I have been trying get some donations for the walk

this month at work, and I am having a tough time

because my company is now raising money for special

olympics. I'm outnumbers 100 to 1. When I mentioned

to someone at work today how it upsets my that

something like CF is thrown on the back burner and is

not so nationally recognized, that even my company (A

MAJOR life insurance co) will not publicly support it.

Anyway the reply to my comments was " But CF isn't

deadly " . Huh?? Am I missing something? Did somebody

at the clinic lie to me? Am I doing treatments for

nothing?? I wanted to laugh so bad. Thatis EXACTLY

the attitude people around me have. They don't know

what it is (though I truly do try to educate them).

The only way I have been able to make them stop and

think about it is by showing them pictures of my

babies getting their treatments. That ALWAYS brings

somebody to tears. I don't do it to be evil, I do it

to bring a point across. That CF IS a big deal. I

mean, MD has their own telethon, Easter Seals has

theirs, the childrens medical centers has theirs, the

make a wish foundation has theirs... where is ours??

It's funny ,considering I live in SouthWest Ohio, the

first thing you hear when you say your kids have CF is

" OH, isn't that what Boomer Esaison's kid has? " (By

the way, his salsa that supports the CFF is GREAT, and

my grocery stores don't carry it anymore. I don't

know if its because its off the market or because

nobody bought it. I think I was the only one) And

then I say " Yes it is " and then they respond " Now what

exactly is that? " I think we should just pick a

holiday and bore people to death for 24 hours on tv

with a telethon...explain to the rest of the world

what this disease is, what it does to the human body,

and what measures must be taken to stay alive... what

the heck.. it works for others. Sorry, I am FULL

of dry humor today. This whole thing at work has just

made me flustered.

__________________________________________________

[Guest guest]

CF AWARENESS WEEK IS OCTOBER (third week ) . this year. It was established 2

years ago and sanctioned by our CONGRESS It is proclaimed !!! YEAH!!

Make sure to plan things in your community. call your radio stations.local

TV, etc. have them make announcements. Send them a flyer about CF . So they

know what to say about it . Make speeches, talks ,etc.

YEAH!! We have a day to tell all. No telethon's yet that I know of except,

Kathleen Shores does one in Aulander NC. I don't know the date. Her son is

on the list I think too His name is DONNIE SHORES. He is deaf but does soooo

many things to AWARE folks about CF Kathleen is 76 years old this year

too!!!

I cant believe my ears

I have been trying get some donations for the walk

this month at work, and I am having a tough time

because my company is now raising money for special

olympics. I'm outnumbers 100 to 1. When I mentioned

to someone at work today how it upsets my that

something like CF is thrown on the back burner and is

not so nationally recognized, that even my company (A

MAJOR life insurance co) will not publicly support it.

Anyway the reply to my comments was " But CF isn't

deadly " . Huh?? Am I missing something? Did somebody

at the clinic lie to me? Am I doing treatments for

nothing?? I wanted to laugh so bad. Thatis EXACTLY

the attitude people around me have. They don't know

what it is (though I truly do try to educate them).

The only way I have been able to make them stop and

think about it is by showing them pictures of my

babies getting their treatments. That ALWAYS brings

somebody to tears. I don't do it to be evil, I do it

to bring a point across. That CF IS a big deal. I

mean, MD has their own telethon, Easter Seals has

theirs, the childrens medical centers has theirs, the

make a wish foundation has theirs... where is ours??

It's funny ,considering I live in SouthWest Ohio, the

first thing you hear when you say your kids have CF is

" OH, isn't that what Boomer Esaison's kid has? " (By

the way, his salsa that supports the CFF is GREAT, and

my grocery stores don't carry it anymore. I don't

know if its because its off the market or because

nobody bought it. I think I was the only one) And

then I say " Yes it is " and then they respond " Now what

exactly is that? " I think we should just pick a

holiday and bore people to death for 24 hours on tv

with a telethon...explain to the rest of the world

what this disease is, what it does to the human body,

and what measures must be taken to stay alive... what

the heck.. it works for others. Sorry, I am FULL

of dry humor today. This whole thing at work has just

made me flustered.

__________________________________________________

[Guest guest]

I definately agree with Torsten.

We have extremely close friends that have a child who was diagnosed with

Autism right around the time Emma was diagnosed for CF. They have been a

source of comfort to us as we can call them up and discuss our problems

and they are willing to listen as are we. They are certainly not in the

same boat as us but its comforting to talk to someone going through tough

experiences as well. The single thing that has struck me is how much is

known about CF and how little is truly known about Autism. There is no

test that can be done to say definately, yes your child has Autism. It's

all subjective and based on each child's individual behavior. They do

not know what causes the disease, vaccines, genetics, who knows. As a

result, they are not vaccinating their younger child out of fear they

will trigger the disease in him as well. They have removed all dairy

from his diet in case this is the trigger. In addition, they do not know

what to do to control the disease. There are no set standards for care

of a child with Autism. Each doctor seems to have his own routine. This

is no foundation supporting research into the causes and improvements in

care for Autism. I have heard CF referred to as the most common genetic

disease but he tells me that Autism is the single most common disease

among children and just about the least founded. I personally won't want

any disease for my child but I feel at least the future for CF continues

to constantly improve with new treatments, etc and I am amazed at what

support there is for this disease. I just wish the same held true for

Autism. Anyway, this is just something I think a lot about.

- mother of Emma (9 months) w/CF and Isabelle wo/CF

On Sun, 6 May 2001 00:50:23 +0200 aberdeen95@... writes:

> Hi ,

>

> don't know whether this may comfort you, but whenever someone

> doesn't know

> anything about CF I keep telling to myself how little I know about

> other

> diseases. What do we know about say 's disease, Marfan's

> syndrome or

> muscular dystrophia. Are they genetic, are they deadly, is there a

> cure? Do they

> occur more often than CF or are they rare? I am thankful whenever

> someone knows

> about Fiona's disease and even took the time to educate him/herself

> about it.

> But I won't blame anyone for not knowing about it. My cousin's

> daughter with CF

> is 17 and I freely admit that for the first thirteen years of her

> life I only

> knew that she had some weird digestive problems.

>

> Bye

> Torsten, dad of Fiona 4wcf

> e-mail: aberdeen95@...

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

,

Lol, Dope Slap?? I like it, have a few people I would like to give a dope

slap too.

And I, like you, have thought the same thing, like while in WAWA and they

have the balloons for the Childrens Miracle Network, do people know that a

portion of that supposedly goes to CF research? And how many of these people

know what our kids, husbands, wives brothers or sisters, even moms and dads,

and great friends, have to go through each and every day to stay as healthy

as possible, or do they even care? Every time I hear Angels in Waiting, I

wonder if people actually know why Tammy Cochran wrote this, and what

significance this has to her and others?

Ok, think I joined your soap box with you, lol

Take care, and I hope you had a nice birthday with , and hope you are

feeling better, as I know you were having a tough time with his first

birthday as it approached.

See ya soon,

, mommy of 4, 16, and now working at Burger King, yeahh, has

turned me into a taxi, Caleb 6 1/2, doing great in Kindergarten, and a great

big brother, 5, uses many forms of art, including body painting, ughhh,

and a wonderful big sister, and 21 months, CF, GERD, bright blue eyes,

a beautiful smile, who loves Barney, swinging and the outside.

..

[Guest guest]

Torsten,

You are always so good at seeing the other side of things. I have to admit,

I dont know much about other diseases, but I guess I just get so frustrated

with people thinking CF is no big deal, and I guess mommys and daddys with

little ones with those diseases you mentioned feel the same way.

Thanks for putting a new light on this, sometimes that is what I need, to be

reminded that others have it hard too, for many reasons.

Take care, and I hope everything is great with Fiona, have a great summer.

, mommy of 4, 16, and now working at Burger King, yeahh, has

turned me into a taxi, Caleb 6 1/2, doing great in Kindergarten, and a great

big brother, 5, uses many forms of art, including body painting, ughhh,

and a wonderful big sister, and 21 months, CF, GERD, bright blue eyes,

a beautiful smile, who loves Barney, swinging and the outside.

..

[Guest guest]

Where exactly do you think I was meaning for the money

to go?? Though, I must admit, I think more money needs

to go to families, because I am sure I am not the only

one getting government assistance to survive. The

drugs are too darned expensive, and the

doctors/hospital visits much too consistent. And I am

doing what I can in regards to the Great Strides walk.

I am walking on May 20, and to raise donations at

work I have taken in pictures of my son during one of

his treatments with his mask and vest on. Some people

actually cry when they see the picture, but still

don't do anything about it. I raised better money

last week when I set a plate of cookies out at each

department with a picture of my kids and a jar for

donations. That went over pretty well.

--- Daelynn wrote:

> ,

>

> One fact is that between 85 to 95 cents of every

> dollar raised for CF research actually goes to

> research, this is one reason for the quick advances

> over the last 10-15 years... the CFF does not spend

> MEGA BUCKS to do telethons because then there

> wouldn't be so much to go to research... If you want

> to catch people, give them the above fact... the CFF

> is one of the top ten charities to donate to, there

> is more research for each dollar donated, that is

> one reason why Bill Gates donated 20 million (or

> was it 25 million) to the CFF. Get some brochures

> from your local CF Foundation office and pick a time

> when your office is not raising money for another

> charity, especially during the area " Great Strides "

> this is our annual fund raising time. If there

> isn't one near you, contact the CFF office nearest

> you and help organize one. Be patient and explain

> what CF is and don't sugar coat it. I give details

> and facts that eventhough the " median life

> expectancy " is 33 years old there are still way too

> many children and young adults dying earlier due to

> the lung infections and malnutrition. This will get

> them. I don't know if this helps you any, but I

> would rather have the money go toward research than

> to go on a telethon.

>

> Take care and keep it up, you are doing a great job

> at educating those around you.

> Daelynn

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

So true... there is always something out there that we

are ignorant about. I guess it just gets me when it

comes to the workplace because I have known these

people for over 10 years now, my kids have been

diagnosed for quite a while, I encourage people to

learn and understand what goes on in their little

lives, I do my best to explain the disease, and they

still just shrug it off. I just don't understand what

makes one disease more important than the other. OH,

I know, just as it was previously said... guess ya

gotta be a millionaire to place a disease in the

spotlight. Just like what I was watching this morning

on J. Fox and his Parkinsons disease pursuit.

--- aberdeen95@... wrote:

> Hi ,

>

> don't know whether this may comfort you, but

> whenever someone doesn't know

> anything about CF I keep telling to myself how

> little I know about other

> diseases. What do we know about say 's

> disease, Marfan's syndrome or

> muscular dystrophia. Are they genetic, are they

> deadly, is there a cure? Do they

> occur more often than CF or are they rare? I am

> thankful whenever someone knows

> about Fiona's disease and even took the time to

> educate him/herself about it.

> But I won't blame anyone for not knowing about it.

> My cousin's daughter with CF

> is 17 and I freely admit that for the first thirteen

> years of her life I only

> knew that she had some weird digestive problems.

>

> Bye

> Torsten, dad of Fiona 4wcf

> e-mail: aberdeen95@...

>

>

__________________________________________________

[Guest guest]

,

My in-laws (outlaws) are very ignorant about cf. They are just simply not

interested in our lives so they make no effort to learn. I caught my father

in law licking Eilish's ice-

block (and he smokes) I made her give it to him. It didnt seem to bother

him.

Re: I cant believe my ears

> So true... there is always something out there that we

> are ignorant about. I guess it just gets me when it

> comes to the workplace because I have known these

> people for over 10 years now, my kids have been

> diagnosed for quite a while, I encourage people to

> learn and understand what goes on in their little

> lives, I do my best to explain the disease, and they

> still just shrug it off. I just don't understand what

> makes one disease more important than the other. OH,

> I know, just as it was previously said... guess ya

> gotta be a millionaire to place a disease in the

> spotlight. Just like what I was watching this morning

> on J. Fox and his Parkinsons disease pursuit.

>

> --- aberdeen95@... wrote:

> > Hi ,

> >

> > don't know whether this may comfort you, but

> > whenever someone doesn't know

> > anything about CF I keep telling to myself how

> > little I know about other

> > diseases. What do we know about say 's

> > disease, Marfan's syndrome or

> > muscular dystrophia. Are they genetic, are they

> > deadly, is there a cure? Do they

> > occur more often than CF or are they rare? I am

> > thankful whenever someone knows

> > about Fiona's disease and even took the time to

> > educate him/herself about it.

> > But I won't blame anyone for not knowing about it.

> > My cousin's daughter with CF

> > is 17 and I freely admit that for the first thirteen

> > years of her life I only

> > knew that she had some weird digestive problems.

> >

> > Bye

> > Torsten, dad of Fiona 4wcf

> > e-mail: aberdeen95@...

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I think a mother's in-laws are the hardest people to

deal with, especially when the kids are sick My

mother in law has a long-haired cat and an alaskan

malamute, and she just doesn't understand that I don't

like to take the kids over there because the animal

hair makes them all 3 wheeze!! And she acts like she

doesn't know where we live. I try to kindly remind

her it goes both ways, and I trust our home a little

more because I know there is no animal hair and no

smoke in the air, very well ventilated, and air

purifiers running all over the place

--- Baxter wrote:

> ,

>

> My in-laws (outlaws) are very ignorant about cf.

> They are just simply not

> interested in our lives so they make no effort to

> learn. I caught my father

> in law licking Eilish's ice-

> block (and he smokes) I made her give it to him. It

> didnt seem to bother

> him.

>

>

> Re: I cant believe my ears

>

>

> > So true... there is always something out there

> that we

> > are ignorant about. I guess it just gets me when

> it

> > comes to the workplace because I have known these

> > people for over 10 years now, my kids have been

> > diagnosed for quite a while, I encourage people to

> > learn and understand what goes on in their little

> > lives, I do my best to explain the disease, and

> they

> > still just shrug it off. I just don't understand

> what

> > makes one disease more important than the other.

> OH,

> > I know, just as it was previously said... guess ya

> > gotta be a millionaire to place a disease in the

> > spotlight. Just like what I was watching this

> morning

> > on J. Fox and his Parkinsons disease

> pursuit.

> >

> > --- aberdeen95@... wrote:

> > > Hi ,

> > >

> > > don't know whether this may comfort you, but

> > > whenever someone doesn't know

> > > anything about CF I keep telling to myself how

> > > little I know about other

> > > diseases. What do we know about say 's

> > > disease, Marfan's syndrome or

> > > muscular dystrophia. Are they genetic, are they

> > > deadly, is there a cure? Do they

> > > occur more often than CF or are they rare? I am

> > > thankful whenever someone knows

> > > about Fiona's disease and even took the time to

> > > educate him/herself about it.

> > > But I won't blame anyone for not knowing about

> it.

> > > My cousin's daughter with CF

> > > is 17 and I freely admit that for the first

> thirteen

> > > years of her life I only

> > > knew that she had some weird digestive problems.

> > >

> > > Bye

> > > Torsten, dad of Fiona 4wcf

> > > e-mail: aberdeen95@...

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

CF AWARENESS WEEK IS OCTOBER (third week ) . this year. It was established 2

years ago and sanctioned by our CONGRESS It is proclaimed !!! YEAH!!

Make sure to plan things in your community. call your radio stations.local

TV, etc. have them make announcements. Send them a flyer about CF . So they

know what to say about it . Make speeches, talks ,etc.

YEAH!! We have a day to tell all. No telethon's yet that I know of except,

Kathleen Shores does one in Aulander NC. I don't know the date. Her son is

on the list I think too His name is DONNIE SHORES. He is deaf but does soooo

many things to AWARE folks about CF Kathleen is 76 years old this year

too!!!

I cant believe my ears

I have been trying get some donations for the walk

this month at work, and I am having a tough time

because my company is now raising money for special

olympics. I'm outnumbers 100 to 1. When I mentioned

to someone at work today how it upsets my that

something like CF is thrown on the back burner and is

not so nationally recognized, that even my company (A

MAJOR life insurance co) will not publicly support it.

Anyway the reply to my comments was " But CF isn't

deadly " . Huh?? Am I missing something? Did somebody

at the clinic lie to me? Am I doing treatments for

nothing?? I wanted to laugh so bad. Thatis EXACTLY

the attitude people around me have. They don't know

what it is (though I truly do try to educate them).

The only way I have been able to make them stop and

think about it is by showing them pictures of my

babies getting their treatments. That ALWAYS brings

somebody to tears. I don't do it to be evil, I do it

to bring a point across. That CF IS a big deal. I

mean, MD has their own telethon, Easter Seals has

theirs, the childrens medical centers has theirs, the

make a wish foundation has theirs... where is ours??

It's funny ,considering I live in SouthWest Ohio, the

first thing you hear when you say your kids have CF is

" OH, isn't that what Boomer Esaison's kid has? " (By

the way, his salsa that supports the CFF is GREAT, and

my grocery stores don't carry it anymore. I don't

know if its because its off the market or because

nobody bought it. I think I was the only one) And

then I say " Yes it is " and then they respond " Now what

exactly is that? " I think we should just pick a

holiday and bore people to death for 24 hours on tv

with a telethon...explain to the rest of the world

what this disease is, what it does to the human body,

and what measures must be taken to stay alive... what

the heck.. it works for others. Sorry, I am FULL

of dry humor today. This whole thing at work has just

made me flustered.

__________________________________________________

[Guest guest]

CF AWARENESS WEEK IS OCTOBER (third week ) . this year. It was established 2

years ago and sanctioned by our CONGRESS It is proclaimed !!! YEAH!!

Make sure to plan things in your community. call your radio stations.local

TV, etc. have them make announcements. Send them a flyer about CF . So they

know what to say about it . Make speeches, talks ,etc.

YEAH!! We have a day to tell all. No telethon's yet that I know of except,

Kathleen Shores does one in Aulander NC. I don't know the date. Her son is

on the list I think too His name is DONNIE SHORES. He is deaf but does soooo

many things to AWARE folks about CF Kathleen is 76 years old this year

too!!!

I cant believe my ears

I have been trying get some donations for the walk

this month at work, and I am having a tough time

because my company is now raising money for special

olympics. I'm outnumbers 100 to 1. When I mentioned

to someone at work today how it upsets my that

something like CF is thrown on the back burner and is

not so nationally recognized, that even my company (A

MAJOR life insurance co) will not publicly support it.

Anyway the reply to my comments was " But CF isn't

deadly " . Huh?? Am I missing something? Did somebody

at the clinic lie to me? Am I doing treatments for

nothing?? I wanted to laugh so bad. Thatis EXACTLY

the attitude people around me have. They don't know

what it is (though I truly do try to educate them).

The only way I have been able to make them stop and

think about it is by showing them pictures of my

babies getting their treatments. That ALWAYS brings

somebody to tears. I don't do it to be evil, I do it

to bring a point across. That CF IS a big deal. I

mean, MD has their own telethon, Easter Seals has

theirs, the childrens medical centers has theirs, the

make a wish foundation has theirs... where is ours??

It's funny ,considering I live in SouthWest Ohio, the

first thing you hear when you say your kids have CF is

" OH, isn't that what Boomer Esaison's kid has? " (By

the way, his salsa that supports the CFF is GREAT, and

my grocery stores don't carry it anymore. I don't

know if its because its off the market or because

nobody bought it. I think I was the only one) And

then I say " Yes it is " and then they respond " Now what

exactly is that? " I think we should just pick a

holiday and bore people to death for 24 hours on tv

with a telethon...explain to the rest of the world

what this disease is, what it does to the human body,

and what measures must be taken to stay alive... what

the heck.. it works for others. Sorry, I am FULL

of dry humor today. This whole thing at work has just

made me flustered.

__________________________________________________

[Guest guest]

CF AWARENESS WEEK IS OCTOBER (third week ) . this year. It was established 2

years ago and sanctioned by our CONGRESS It is proclaimed !!! YEAH!!

Make sure to plan things in your community. call your radio stations.local

TV, etc. have them make announcements. Send them a flyer about CF . So they

know what to say about it . Make speeches, talks ,etc.

YEAH!! We have a day to tell all. No telethon's yet that I know of except,

Kathleen Shores does one in Aulander NC. I don't know the date. Her son is

on the list I think too His name is DONNIE SHORES. He is deaf but does soooo

many things to AWARE folks about CF Kathleen is 76 years old this year

too!!!

I cant believe my ears

I have been trying get some donations for the walk

this month at work, and I am having a tough time

because my company is now raising money for special

olympics. I'm outnumbers 100 to 1. When I mentioned

to someone at work today how it upsets my that

something like CF is thrown on the back burner and is

not so nationally recognized, that even my company (A

MAJOR life insurance co) will not publicly support it.

Anyway the reply to my comments was " But CF isn't

deadly " . Huh?? Am I missing something? Did somebody

at the clinic lie to me? Am I doing treatments for

nothing?? I wanted to laugh so bad. Thatis EXACTLY

the attitude people around me have. They don't know

what it is (though I truly do try to educate them).

The only way I have been able to make them stop and

think about it is by showing them pictures of my

babies getting their treatments. That ALWAYS brings

somebody to tears. I don't do it to be evil, I do it

to bring a point across. That CF IS a big deal. I

mean, MD has their own telethon, Easter Seals has

theirs, the childrens medical centers has theirs, the

make a wish foundation has theirs... where is ours??

It's funny ,considering I live in SouthWest Ohio, the

first thing you hear when you say your kids have CF is

" OH, isn't that what Boomer Esaison's kid has? " (By

the way, his salsa that supports the CFF is GREAT, and

my grocery stores don't carry it anymore. I don't

know if its because its off the market or because

nobody bought it. I think I was the only one) And

then I say " Yes it is " and then they respond " Now what

exactly is that? " I think we should just pick a

holiday and bore people to death for 24 hours on tv

with a telethon...explain to the rest of the world

what this disease is, what it does to the human body,

and what measures must be taken to stay alive... what

the heck.. it works for others. Sorry, I am FULL

of dry humor today. This whole thing at work has just

made me flustered.

__________________________________________________

[Guest guest]

I got this message three times. Anyone else with this problem?

Lori

I cant believe my ears

I have been trying get some donations for the walk

this month at work, and I am having a tough time

because my company is now raising money for special

olympics. I'm outnumbers 100 to 1. When I mentioned

to someone at work today how it upsets my that

something like CF is thrown on the back burner and is

not so nationally recognized, that even my company (A

MAJOR life insurance co) will not publicly support it.

Anyway the reply to my comments was " But CF isn't

deadly " . Huh?? Am I missing something? Did somebody

at the clinic lie to me? Am I doing treatments for

nothing?? I wanted to laugh so bad. Thatis EXACTLY

the attitude people around me have. They don't know

what it is (though I truly do try to educate them).

The only way I have been able to make them stop and

think about it is by showing them pictures of my

babies getting their treatments. That ALWAYS brings

somebody to tears. I don't do it to be evil, I do it

to bring a point across. That CF IS a big deal. I

mean, MD has their own telethon, Easter Seals has

theirs, the childrens medical centers has theirs, the

make a wish foundation has theirs... where is ours??

It's funny ,considering I live in SouthWest Ohio, the

first thing you hear when you say your kids have CF is

" OH, isn't that what Boomer Esaison's kid has? " (By

the way, his salsa that supports the CFF is GREAT, and

my grocery stores don't carry it anymore. I don't

know if its because its off the market or because

nobody bought it. I think I was the only one) And

then I say " Yes it is " and then they respond " Now what

exactly is that? " I think we should just pick a

holiday and bore people to death for 24 hours on tv

with a telethon...explain to the rest of the world

what this disease is, what it does to the human body,

and what measures must be taken to stay alive... what

the heck.. it works for others. Sorry, I am FULL

of dry humor today. This whole thing at work has just

made me flustered.

__________________________________________________

[Guest guest]

I got another message over 50 times. I think there may be a glitch in the

system that disperses the messages.

>

>Reply-To: cfparents

>To: <cfparents >

>Subject: RE: I cant believe my ears

>Date: Mon, 7 May 2001 07:33:20 -0500

>

>I got this message three times. Anyone else with this problem?

>

>Lori

>

> I cant believe my ears

>

>

> I have been trying get some donations for the walk

> this month at work, and I am having a tough time

> because my company is now raising money for special

> olympics. I'm outnumbers 100 to 1. When I mentioned

> to someone at work today how it upsets my that

> something like CF is thrown on the back burner and is

> not so nationally recognized, that even my company (A

> MAJOR life insurance co) will not publicly support it.

> Anyway the reply to my comments was " But CF isn't

> deadly " . Huh?? Am I missing something? Did somebody

> at the clinic lie to me? Am I doing treatments for

> nothing?? I wanted to laugh so bad. Thatis EXACTLY

> the attitude people around me have. They don't know

> what it is (though I truly do try to educate them).

> The only way I have been able to make them stop and

> think about it is by showing them pictures of my

> babies getting their treatments. That ALWAYS brings

> somebody to tears. I don't do it to be evil, I do it

> to bring a point across. That CF IS a big deal. I

> mean, MD has their own telethon, Easter Seals has

> theirs, the childrens medical centers has theirs, the

> make a wish foundation has theirs... where is ours??

> It's funny ,considering I live in SouthWest Ohio, the

> first thing you hear when you say your kids have CF is

> " OH, isn't that what Boomer Esaison's kid has? " (By

> the way, his salsa that supports the CFF is GREAT, and

> my grocery stores don't carry it anymore. I don't

> know if its because its off the market or because

> nobody bought it. I think I was the only one) And

> then I say " Yes it is " and then they respond " Now what

> exactly is that? " I think we should just pick a

> holiday and bore people to death for 24 hours on tv

> with a telethon...explain to the rest of the world

> what this disease is, what it does to the human body,

> and what measures must be taken to stay alive... what

> the heck.. it works for others. Sorry, I am FULL

> of dry humor today. This whole thing at work has just

> made me flustered.

>

> __________________________________________________

>

[Guest guest]

YES, I have been having it off and on. some came

in at 13............another 9 copies. Many 2-3

copies. Gosh .It sure takes up a lot of space. Oh,

well .I just hit delete...haha

LOVE, GRNDMBEV

I cant believe my ears

I have been trying get some donations for the

walk

this month at work, and I am having a tough time

because my company is now raising money for

special

olympics. I'm outnumbers 100 to 1. When I

mentioned

to someone at work today how it upsets my that

something like CF is thrown on the back burner

and is

not so nationally recognized, that even my

company (A

MAJOR life insurance co) will not publicly

support it.

Anyway the reply to my comments was " But CF

isn't

deadly " . Huh?? Am I missing something? Did

somebody

at the clinic lie to me? Am I doing treatments

for

nothing?? I wanted to laugh so bad. Thatis

EXACTLY

the attitude people around me have. They don't

know

what it is (though I truly do try to educate

them).

The only way I have been able to make them stop

and

think about it is by showing them pictures of my

babies getting their treatments. That ALWAYS

brings

somebody to tears. I don't do it to be evil, I

do it

to bring a point across. That CF IS a big deal.

I

mean, MD has their own telethon, Easter Seals

has

theirs, the childrens medical centers has

theirs, the

make a wish foundation has theirs... where is

ours??

It's funny ,considering I live in SouthWest

Ohio, the

first thing you hear when you say your kids have

CF is

" OH, isn't that what Boomer Esaison's kid has? "

(By

the way, his salsa that supports the CFF is

GREAT, and

my grocery stores don't carry it anymore. I

don't

know if its because its off the market or

because

nobody bought it. I think I was the only one)

And

then I say " Yes it is " and then they respond

" Now what

exactly is that? " I think we should just pick a

holiday and bore people to death for 24 hours on

tv

with a telethon...explain to the rest of the

world

what this disease is, what it does to the human

body,

and what measures must be taken to stay alive...

what

the heck.. it works for others. Sorry, I am

FULL

of dry humor today. This whole thing at work

has just

made me flustered.

__________________________________________________

[Guest guest]

I've actually gotten it like 8 times and several other mailings have been

coming in groupings all of a sudden.

Dawn Meeks

I cant believe my ears

>

>

> I have been trying get some donations for the walk

> this month at work, and I am having a tough time

> because my company is now raising money for special

> olympics. I'm outnumbers 100 to 1. When I mentioned

> to someone at work today how it upsets my that

> something like CF is thrown on the back burner and is

> not so nationally recognized, that even my company (A

> MAJOR life insurance co) will not publicly support it.

> Anyway the reply to my comments was " But CF isn't

> deadly " . Huh?? Am I missing something? Did somebody

> at the clinic lie to me? Am I doing treatments for

> nothing?? I wanted to laugh so bad. Thatis EXACTLY

> the attitude people around me have. They don't know

> what it is (though I truly do try to educate them).

> The only way I have been able to make them stop and

> think about it is by showing them pictures of my

> babies getting their treatments. That ALWAYS brings

> somebody to tears. I don't do it to be evil, I do it

> to bring a point across. That CF IS a big deal. I

> mean, MD has their own telethon, Easter Seals has

> theirs, the childrens medical centers has theirs, the

> make a wish foundation has theirs... where is ours??

> It's funny ,considering I live in SouthWest Ohio, the

> first thing you hear when you say your kids have CF is

> " OH, isn't that what Boomer Esaison's kid has? " (By

> the way, his salsa that supports the CFF is GREAT, and

> my grocery stores don't carry it anymore. I don't

> know if its because its off the market or because

> nobody bought it. I think I was the only one) And

> then I say " Yes it is " and then they respond " Now what

> exactly is that? " I think we should just pick a

> holiday and bore people to death for 24 hours on tv

> with a telethon...explain to the rest of the world

> what this disease is, what it does to the human body,

> and what measures must be taken to stay alive... what

> the heck.. it works for others. Sorry, I am FULL

> of dry humor today. This whole thing at work has just

> made me flustered.

>

> __________________________________________________

>