RE: Prevelence of Charge Syndrome

[Guest guest]

YES YES YES!!!

I very rarely come accross someone who knows what CHARGE Syndrome is (INCLUDING

DRS!!!!!!!!!) - I

thought the prevelence was 1 in 10,000 to 12,000 though.

But even at that rate their should be 5 other cases in my town and I don't have

a clue where these people are.

For example, Ally's vision teacher told me there are only 3 known cases in

Virginia - well I know of more than that!!!!!!!

This is a horrible thought but I have always secretly wished a celebrity or

polititian would have a baby diagnosed with CHARGE and increase public awareness

and maybe get the ball rolling on finding the cause.

robin mom to Ally CHARGE 22 mths

[Guest guest]

Excellent idea about Oprah!!

I have often thought of it myself. She does such wonderful service to the

community at large (usa) that her producers may consider a show on other

syndromes and include CHARGE or do a whole one on the children and how

parents cope and actually accept and enjoy the differences as well as handle

all of the complicated medical aspects of the children. Some people truely do

not understand that you accept your child and really dont see the differences

in such a negative way. They actually feel sorry for us. I hate that. But

the idea of an OPprah show is wonderful! I think it would be great!!

You can go online at her website and suggest it. I may do that today!!!

ck

[Guest guest]

Yes, again!! We need a celebrity.

Actually, there are quite a few cases in Michigan and I am friendly with a

lady in my area who has a CHARGER. We have enough down here to have a picnic

anually.

ck

[Guest guest]

Wow! I didn't know that statistic. Where

did you read that?

Yes, Oprah does still do shows like that.

Someone should invite her to our next conference here in the U.S.

While at the International Parent-to-Parent Conference,

in Reno, NV, I was proud to hear a "professional" who works with children

with Deaf-Blindness in TX say that she had attended her first CHARGE conference

last year and how she was "just blown away" by the parents---our knowledge

of our children and of CHARGE and our passion for finding the best services

for our kids, our sense of "family" as of parents of kids w/ CHARGE, the

impressive list of presenters... she just went on and on. I gave her our

list serve address and told her if she really wanted an "inside scoop"

log on and read what we're going through on a daily basis. I'm sure

her admiration will grow!

Shaunie Schmoll

Mom to , Brendon and Caillean

Eugene, OR

Jan Hewitson wrote:

I

have been doing a bit of research on the net about how often Charge Syndrome

occurs. The figure put forward is 1 in 1200 births. The figure

for Downs Syndrome is 1 in 1250 births for women under 25. If

it occurs as frequently as that why is it still considered rare and why

is it most people have never heard of it ? Do we need to raise the

awareness of Charge in the media to hopefully reach as many people as possible.Didn't

Oprah do a show on Angelmans Syndrome and other orphan diagnosis, does

she do those kind of shows anymore ? Just

a thought. Wouldn't it be nice not to have to explain Charge every time

! Jan Hewitson Mum

to LarryPerth West AustraliaFor information about the CHARGE

Syndrome

Foundation or to become a member please

contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

I agree. I live in Northern New York and when I mention CHARGE, every

doctor say's WHAT! The awareness level needs to be raised, our kids

deserved the same fighting chance as all other children with diseases and

syndromes. Maybe Oprah's production people need a phone call, it would be a

great place to start!!!

Prevelence of Charge Syndrome

I have been doing a bit of research on the net about how often

Charge Syndrome occurs. The figure put forward is 1 in 1200 births. The

figure for Downs Syndrome is 1 in 1250 births for women under 25.

If it occurs as frequently as that why is it still considered rare

and why is it most people have never heard of it ? Do we need to raise the

awareness of Charge in the media to hopefully reach as many people as

possible.

Didn't Oprah do a show on Angelmans Syndrome and other orphan

diagnosis, does she do those kind of shows anymore ?

Just a thought. Wouldn't it be nice not to have to explain Charge

every time !

Jan Hewitson Mum to Larry

Perth West Australia

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http://click./1/5672/2/_/22564/_/961770698/

<http://click./1/5672/2/_/22564/_/961770698/>

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0.gif

<http://adimg./img/5672/2/_/22564/_/961770698/ColorMeRevised-468x

60.gif>

_____

For information about the CHARGE Syndrome

Foundation or to become a member please

contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org <http://www.chargesyndrome.org>

[Guest guest]

Jan,

from what I have read it's 1 in 12 000 are you sure you read the right numbers??? I've never heard of it being that common!

Where was it you read that?

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Prevelence of Charge Syndrome

I have been doing a bit of research on the net about how often Charge Syndrome occurs. The figure put forward is 1 in 1200 births. The figure for Downs Syndrome is 1 in 1250 births for women under 25.

If it occurs as frequently as that why is it still considered rare and why is it most people have never heard of it ? Do we need to raise the awareness of Charge in the media to hopefully reach as many people as possible.

Didn't Oprah do a show on Angelmans Syndrome and other orphan diagnosis, does she do those kind of shows anymore ?

Just a thought. Wouldn't it be nice not to have to explain Charge every time !

Jan Hewitson Mum to Larry

Perth West Australia For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

What e-mail address did you use?

Re: Prevelence of Charge Syndrome

i just sent oprah an e-mail about this...please do it today..

Re: Prevelence of Charge Syndrome

Excellent idea about Oprah!!

I have often thought of it myself. She does such wonderful

service to the

community at large (usa) that her producers may consider a

show on other

syndromes and include CHARGE or do a whole one on the

children and how

parents cope and actually accept and enjoy the differences

as well as handle

all of the complicated medical aspects of the children. Some

people truely do

not understand that you accept your child and really dont

see the differences

in such a negative way. They actually feel sorry for us. I

hate that. But

the idea of an OPprah show is wonderful! I think it would be

great!!

You can go online at her website and suggest it. I may do

that today!!!

ck

For information about the CHARGE Syndrome

Foundation or to become a member please

contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

<http://www.chargesyndrome.org>

_____

http://click./1/4326/2/_/22564/_/961787109/

<http://click./1/4326/2/_/22564/_/961787109/>

http://adimg./img/4326/2/_/22564/_/961787109/pr_pc_468_12k.gif

<http://adimg./img/4326/2/_/22564/_/961787109/pr_pc_468_12k.gif>

_____

For information about the CHARGE Syndrome

Foundation or to become a member please

contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org <http://www.chargesyndrome.org>

[Guest guest]

i just sent oprah an e-mail about this...please do it today..

Re: Prevelence of Charge Syndrome

Excellent idea about Oprah!!I have often thought of it myself. She does such wonderful service to the community at large (usa) that her producers may consider a show on other syndromes and include CHARGE or do a whole one on the children and how parents cope and actually accept and enjoy the differences as well as handle all of the complicated medical aspects of the children. Some people truely do not understand that you accept your child and really dont see the differences in such a negative way. They actually feel sorry for us. I hate that. But the idea of an OPprah show is wonderful! I think it would be great!!You can go online at her website and suggest it. I may do that today!!!ckFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org