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Dear Elaine,

We'll be thinking of you and Jack and wish you well during this trip and

Jack's surgery. We know how important it is, and how difficult it is. You

are both in our hearts and thoughts. Maureen and daughter Anita (mom of

(27 month old CHARGER).

>

>>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

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Dear Elaine,

We'll be thinking of you and Jack and wish you well during this trip and

Jack's surgery. We know how important it is, and how difficult it is. You

are both in our hearts and thoughts. Maureen and daughter Anita (mom of

(27 month old CHARGER).

>

>>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

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  • 4 weeks later...

Sometimes when I get 100's of emails after not being able to check them for a

day or two, I do a quick scan, I can usually tell by the first few words of a

mail if I need to read it when I have an overwhelming number of mails to read.

Mom to Kennedy 21 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

UNSUBSCRIBE

I am disappointed that I have to do this.....With all of the chit chat that

goes back and forth between you all, it is hard to wade thru all of the

hundreds of messages to see what might pertain to our situation. Does anyone

else feel this frustration??

---------------------------

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Re: Canadian Charge Statistics

>>Date: Wed, 03 Nov 1999 21:12:25 +1100

>>

>>

>>

>>hi tom and friends

>>

>>thx for the enquiry. my visit to the mcmaster university group

>>(hamilton) was to obtain assistance with the australasian charge study.

>>i presented my provisional figures for canada - the same i did in

>>houston.

>>

>>kim blake should be encouraged to aplly if funding is earmarked for db

>>services. charge is an ideal db condition to study and it should by be

>>done canadian specialists.

>>

>>kim blake could advise u on who should do the research. my own view is

>>that it is dependent on the research question u want answers for e.g.

>>

>>diagnosis and causation - geneticists

>>birth and death rates - epidemiologists

>>developmental outcome - paediatricians, db specialists, psychologists,

>>educationists, ots, pts

>>growth and maturation - endocrinologists, paediatricians, dietitians

>>feeding - nutritionists, speech pathologists, paediatric surgeons,

>>gastro-enterologists, paediatricians

>>deafness, language and communication - db specialists, audiologists,

>>speech pathologists, ents and cochlear implantists

>>visual impairments - ophthalmologists, db specialists, orthopists

>>

>>single hospital studies i would not encourage. Charge is to rare,

>>complex and too special for that. Statewide or national data collection

>>is much more meaningful, representative and scientifically valid.

>>

>>i hope this helps in your deliberations.

>>

>>i will be back in hamilton and toronto in the summer of 2001. we should

>>meet.

>>

>>george

>>

>>Tom Gloyn wrote:

>> >

>> > From:

>> >

>> > Re: One in 15:000?

>> >

>> > :

>> > Did you ever get a CHARGE registry set up in Canada? You were around

>> > Hamilton, St. ph's Hospital this summer? If not, the CBDRA got

>>funding

>> > for a long overdue deafblind registry for Canada, so maybe this could

be

>> > extended to CHARGE? Or would a hospital need to be responsible for the

>> > collection of data?

>> > ANN

>> >

>> > >

>> > >

>> > > hi tim and friends

>> > >

>> > > kim blake in one her publications estimated the rate to be 1 in

12,000

>> > > live births. having looked at a number of first world countries, i

>> > > believe the rate is much less frequent. i guessing about one in

50,000

>> > > to 100,000 live births. There are has been no systemic study of this.

>> > > the variables that can impact on the figures and live outcomes are:

>> > >

>> > > termination rate for birth defects - small impact

>> > > spontaneous losses from miscarriages - small impact

>> > > mortality - moderate impact (40% in some series)

>> > > quality of life saving care - mild impact

>> > > missed or undiagnosed children - mild impact

>> > >

>> > > i have written to the French and Belgium groups for their figures.

>> > >

>> > > Hopefully our national prospective study commencing in Jan 2000 in

>> > > Australia and New Zealand will give us more accurate figures.

>>Something

>> > > for Indianopolisin 2001!

>> > >

>> > > How about somebody putting together the figures of each State in the

>> > > USA. I am happy to coordinate the project? Let me know what u think?

>> > >

>> > > george williams

>> > > babydoc

>> > > Oz

>> >

>> > > For information about the CHARGE Syndrome Foundation or to become a

>>member please contact marion@....

>>

>>>For information about the CHARGE Syndrome Foundation or to become a

member

>>please contact marion@....

>>

>

>>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

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  • 2 years later...

In a message dated 2/19/02 8:14:56 PM Central Standard Time,

starangel_30@... writes:

> Whats up with this message???? I didnt unsubscribe

let me check and make sure everything is ok on your preferences..

You're posting ok so you must be still a listed member thank goodness...

I'll check and make sure everything is ok..

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Whats up with this message???? I didnt unsubscribe?????? Im really lost on this

one, what do you guys think???

Donna S

Fort Hood, TX

--------------------------------------------------------------------------------\

-----------------------------------------------------

patrolpainting@... wrote: In a message dated 2/19/02 3:47:24 PM Pacific

Standard Time,

starangel_30@... writes:

> GastricBypass-InfoCentral-unsubscribeegroups

>

>

>

>

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DONNA--No hon--it was for the lady mentioned first! (patrolpainting

etc.) LOL! If you've stopped getting our mail, let us know--we're not

gonna do without you!

Love, Ava Lee

In GastricBypass-InfoCentral@y..., Donna <starangel_30@y...> wrote:

>

> Whats up with this message???? I didnt unsubscribe?????? Im really

lost on this one, what do you guys think???

> Donna S

> Fort Hood, TX

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

-----------------------------------------------------------------

>

> patrolpainting@a... wrote: In a message dated 2/19/02 3:47:24 PM

Pacific Standard Time,

> starangel_30@y... writes:

>

>

> > GastricBypass-InfoCentral-unsubscribe@e...

> >

> >

> >

> >

>

>

>

>

>

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LOL Im still getting you guys mail, it just looked like I had written it....LOL

Thanks hon

avan588649 wrote: DONNA--No hon--it was for the lady

mentioned first! (patrolpainting

etc.) LOL! If you've stopped getting our mail, let us know--we're not

gonna do without you!

Love, Ava Lee

In GastricBypass-InfoCentral@y..., Donna <starangel_30@y...> wrote:

>

> Whats up with this message???? I didnt unsubscribe?????? Im really

lost on this one, what do you guys think???

> Donna S

> Fort Hood, TX

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

-----------------------------------------------------------------

>

> patrolpainting@a... wrote: In a message dated 2/19/02 3:47:24 PM

Pacific Standard Time,

> starangel_30@y... writes:

>

>

> > GastricBypass-InfoCentral-unsubscribe@e...

> >

> >

> >

> >

>

>

>

>

>

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I think Pat just wrote to unsub her here !

Re: unsubscribe

Whats up with this message???? I didnt unsubscribe?????? Im really lost on

this one, what do you guys think???

Donna S

Fort Hood, TX

--------------------------------------------------------------------------------\

-----------------------------------------------------

patrolpainting@... wrote: In a message dated 2/19/02 3:47:24 PM Pacific

Standard Time,

starangel_30@... writes:

> GastricBypass-InfoCentral-unsubscribeegroups

>

>

>

>

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