Re: IMO ONLY, Washington Post Article

[Guest guest]

In a message dated 2/20/2001 6:47:07 AM Pacific Standard Time,

rmax@... writes:

<< Great story, happy ending, but sad that it takes a refugee family to

bring attention to something we deal with 24/7. ~>Becky

>>

Well, we have to admit any press is good press. And lets all hope they rename

this silly disease after those refuge people so we are not stuck with this

tooth trouble.

[Guest guest]

In a message dated 2/20/2001 11:36:26 AM Eastern Standard Time,

BILL@... writes:

<< Politics, plain and simple. Why do we as a country spend billions on

foreign

aid when we have children in our own backyards that go to sleep hungry >>

That's exactly how I feel. Sorry Gretchen, getting on other subjects.

[Guest guest]

-----Original Message-----

From: Maxwell <rmax@...>

< >

Date: Tuesday, February 20, 2001 8:32 AM

Subject: [] IMO ONLY, Washington Post Article

>>>>>>>Before someone brings this point up, I will. Yes these kids had

SEVERE deformitis of CMT. So that in connection with their situation, makes

news. But What of the CMT families/persons who have had this surgery before,

that had these conditions? Where is their story in the papers? This is not

new to CMT nor is surgery to correct these problems, so where are the

stories of those at? Where is the stories of CMT and the families who have

these severe problems connected with it? Its not new, been here for years

and yet no one hears of that do they? ~>Becky M.

>The Washington Post article is a good article, its a sad story and has a

happy ending. Yet it makes me angry.

>

> Why angry? Because it takes a refugee family to bring attention to a

disease many americans suffer and have suffered since the beginning of time

and yet its the least heard of disease! But let a refugee family have it

and WOW National attention in the papers! Many americans are struggling to

get care for this disease and many are left untreated, yet this family gets

help, which yes they needed, but what of our own? What about national

attention to CMT for EVERYONE? If I had gone to or wrote/called the

Washington Post or other large paper and asked if they would do a story on

CMT what do you think my chances would of been that they would do it? Not

enough sensationalism for them. Or I'd get to be a fill in story to take up

space in the last section of the paper that no one reads.

>

> Great story, happy ending, but sad that it takes a refugee family to

bring attention to something we deal with 24/7. ~>Becky

>

>

>

[Guest guest]

I agree. Thanks for posting this information.

----- Original Message -----

From: Maxwell <rmax@...>

< >

Sent: Tuesday, February 20, 2001 8:37 AM

Subject: [] IMO ONLY, Washington Post Article

> The Washington Post article is a good article, its a sad story and has a

happy ending. Yet it makes me angry.

>

> Why angry? Because it takes a refugee family to bring attention to a

disease many americans suffer and have suffered since the beginning of time

and yet its the least heard of disease! But let a refugee family have it

and WOW National attention in the papers! Many americans are struggling to

get care for this disease and many are left untreated, yet this family gets

help, which yes they needed, but what of our own? What about national

attention to CMT for EVERYONE? If I had gone to or wrote/called the

Washington Post or other large paper and asked if they would do a story on

CMT what do you think my chances would of been that they would do it? Not

enough sensationalism for them. Or I'd get to be a fill in story to take up

space in the last section of the paper that no one reads.

>

> Great story, happy ending, but sad that it takes a refugee family to

bring attention to something we deal with 24/7. ~>Becky

>

>

>

[Guest guest]

Politics, plain and simple. Why do we as a country spend billions on foreign

aid when we have children in our own backyards that go to sleep hungry?

Politics! The bureaucrats get lots of mileage from stories like these. I am

glad this poor family got help but it does make you think.

Regards,

BC

----- Original Message -----

From: Maxwell <rmax@...>

< >

Sent: Tuesday, February 20, 2001 6:37 AM

Subject: [] IMO ONLY, Washington Post Article

> The Washington Post article is a good article, its a sad story and has a

happy ending. Yet it makes me angry.

>

> Why angry? Because it takes a refugee family to bring attention to a

disease many americans suffer and have suffered since the beginning of time

and yet its the least heard of disease! But let a refugee family have it

and WOW National attention in the papers! Many americans are struggling to

get care for this disease and many are left untreated, yet this family gets

help, which yes they needed, but what of our own? What about national

attention to CMT for EVERYONE? If I had gone to or wrote/called the

Washington Post or other large paper and asked if they would do a story on

CMT what do you think my chances would of been that they would do it? Not

enough sensationalism for them. Or I'd get to be a fill in story to take up

space in the last section of the paper that no one reads.

>

> Great story, happy ending, but sad that it takes a refugee family to

bring attention to something we deal with 24/7. ~>Becky

>

>

>

[Guest guest]

If everyone complains to the Washington Post about the article they sure

won't be interested in writing any more articles about CMT or other ailments.

Think about it.

Kat

[Guest guest]

In a message dated 2/20/01 4:05:57 PM, rmax@... writes:

<< Unless I read Gretchens post wrong, I thought that was her idea too, >>

Sounds good to me. It was hard to tell.

Kat

[Guest guest]

Becky

I am sorry you are angry and I understand why you are.... It is very

upsetting in many areas... We have all known for a very long time

that CMT would not get recognition without sensalilzation, and I

personally would rather it come from someone that doesn't have

everything already like the Kosovo family, instead of like a movie

star with CMT that has or can get anything (not to down movie stars).

All I can do is hope that since this did get National attention then

maybe more Dr's and people will be that much more aware.... This type

of stuff happens everywhere and with non-medical issues also...

I had dinner with my husbands fellow manager and wife and he was

saying how he bought pizza for his employees to show them he

appreciated them... (This manager is only alloted so much money by

the company and can only do what the company allows him to do). One

of his employees got upset that it was pizza and that the type he

likes wasn't there... The employee kept saying I would have rather

this and that etc.... The manager did his best to let it ride but

felt he had done the best he could with what he had to work with...

What I am trying to say and doing it poorly is....

The reporters are doing thier job, they are telling a story to sale

papers... It worked... I am gratefull that at least CMT is now known

by more individuals.

Regi

**********************

**********************

> The Washington Post article is a good article, its a sad story and

has a happy ending. Yet it makes me angry.

>

> Why angry? Because it takes a refugee family to bring

attention to a disease many americans suffer and have suffered since

the beginning of time and yet its the least heard of disease! But

let a refugee family have it and WOW National attention in the

papers! Many americans are struggling to get care for this disease

and many are left untreated, yet this family gets help, which yes

they needed, but what of our own? What about national attention to

CMT for EVERYONE? If I had gone to or wrote/called the Washington

Post or other large paper and asked if they would do a story on CMT

what do you think my chances would of been that they would do it?

Not enough sensationalism for them. Or I'd get to be a fill in story

to take up space in the last section of the paper that no one reads.

>

> Great story, happy ending, but sad that it takes a refugee

family to bring attention to something we deal with 24/7. ~>Becky

>

>

>

[Guest guest]

In a message dated 2/20/2001 4:15:01 PM Pacific Standard Time,

zenamarie123@... writes:

> What I am trying to say and doing it poorly is....

> The reporters are doing thier job, they are telling a story to sale

> papers... It worked... I am gratefull that at least CMT is now known

> by more individuals.

> Regi

>

>

The reporters are not doing a good job if they use the " C " word.

Don't they have any manners?

[Guest guest]

In a message dated 2/20/2001 4:45:16 PM Pacific Standard Time,

liliwigg@... writes:

> No, Becky and Kat, I had not intended for people to write 'criticisms'

> necessarily to the Post, but to write expressing your views of CMT, and

> possibly bringing out more awareness of CMT into the 'First World'.

> Becky, you read what I was saying correctly. ~

>

>

Oh Gretchen you just took all the fun out of it.

[Guest guest]

-----Original Message-----

From: KathleenLS@... <KathleenLS@...>

< >

Date: Tuesday, February 20, 2001 5:47 PM

Subject: Re: [] IMO ONLY, Washington Post Article

>If everyone complains to the Washington Post about the article they sure

>won't be interested in writing any more articles about CMT or other

ailments.

>

>Think about it.

>

>Kat

>>>>>>>>>Kat I hadn't thought of complaining about the article, but rather

ask them to do a sort of follow up or related to story about CMT. To help

raise awareness to CMT since they did this one. Unless I read Gretchens

post wrong, I thought that was her idea too, ~>Becky M.

[Guest guest]

No, Becky and Kat, I had not intended for people to write 'criticisms'

necessarily to the Post, but to write expressing your views of CMT, and

possibly bringing out more awareness of CMT into the 'First World'.

Becky, you read what I was saying correctly. ~

[Guest guest]

CMT Group-

I read the Washington Post Article that was posted up. I'm sorry

to say I'm relitively disgusted. It irritates me that CMT is only

considered remotely important after it's been embellished in a melo-

dramatic article. I'm sorry, I know I'm supposed to try and stay

positive but I'm truly just being honest about what I think.

While it is nice that people suffering from CMT are finally

getting some attention, you would hope that just having CMT would be

enough of a situation. Of course, only when you're escaping from a

war-torn country does CMT slightly stand out. My case of CMT is not

very severe, but when there are victems in wheelchairs and using

canes how could people be oblivious to what they are diagnosed with?

It's good to hear that those people found treatment, it is a happy

ending, but why is having CMT not enough?

-Marta

[Guest guest]

Quite true, Kat..

Just my opinion,

----- Original Message -----

From: KathleenLS@...

Sent: Tuesday, February 20, 2001 5:41 PM

Subject: Re: [] IMO ONLY, Washington Post Article

If everyone complains to the Washington Post about the article they sure

won't be interested in writing any more articles about CMT or other ailments.

Think about it.

Kat