RE: CHARGE Manual on the web!!

[Guest guest]

Congratulations to the foundation - this is absolutely WONDERFUL news.

Great work guys and thank you Jay and company!

>

> Hi everybody,

> I have the great pleasure of being the person who gets to

> announce that the CHARGE Syndrome Foundation website now has

> CHARGE Syndrome: a management manual for parents available

> on the Internet in pdf format.

>

> You can access it section by section or download the entire

> Manual. Photos and all! A HUGE thank you goes to Jay Bradup

> (dad of the lovely Adele, recent cover girl on ADVANCE)

> who's company Kineticcom.com did all the work for us.

>

> While you are there (www.chargesyndrome.com), check out

> other Foundation info – join the Foundation (the paltry

> membership dues of $15 per year for a family helps keep the

> Foundation going), join a committee, or just look at all

> those wonderful photos of the kids.

>

> We are just beginning the project of updating the Manual.

> As sections are updated, we'll replace old sections. They

> all have dates on them, so you can tell which sections are

> new. Go, look, enjoy, send us comments (click on Future

> Additions to the Manual at the bottom of the Manual page of

> the website). This is so exciting, I can hardly stand it!

> Meg

>

> Meg Hefner, M.S.

> Genetic Counselor

> St. Louis, MO

> hefnerma@... meg@...

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Congratulations to the foundation - this is absolutely WONDERFUL news.

Great work guys and thank you Jay and company!

>

> Hi everybody,

> I have the great pleasure of being the person who gets to

> announce that the CHARGE Syndrome Foundation website now has

> CHARGE Syndrome: a management manual for parents available

> on the Internet in pdf format.

>

> You can access it section by section or download the entire

> Manual. Photos and all! A HUGE thank you goes to Jay Bradup

> (dad of the lovely Adele, recent cover girl on ADVANCE)

> who's company Kineticcom.com did all the work for us.

>

> While you are there (www.chargesyndrome.com), check out

> other Foundation info – join the Foundation (the paltry

> membership dues of $15 per year for a family helps keep the

> Foundation going), join a committee, or just look at all

> those wonderful photos of the kids.

>

> We are just beginning the project of updating the Manual.

> As sections are updated, we'll replace old sections. They

> all have dates on them, so you can tell which sections are

> new. Go, look, enjoy, send us comments (click on Future

> Additions to the Manual at the bottom of the Manual page of

> the website). This is so exciting, I can hardly stand it!

> Meg

>

> Meg Hefner, M.S.

> Genetic Counselor

> St. Louis, MO

> hefnerma@... meg@...

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Meg,

Your link does go to a medical page. The address to the foundation website

is not www.chargesyndrome.com but www.chargesyndrome.org. Now how silly is

that! The only difference is .org at the end and not .com.

This computer stuff is frustrating sometimes.

Whatever--- All I know is how wonderful it is to have the Manual on the

website. Your input in all of that is just extraordinary as is the effort of

everyone who compiled and edited the Manual. The manual is something I live by

and

is one of the most important things we can have about our children!

And yea for Jay for putting that on the web for everyone. That took tons of

time and care. What a wonderful job.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Meg,

Your link does go to a medical page. The address to the foundation website

is not www.chargesyndrome.com but www.chargesyndrome.org. Now how silly is

that! The only difference is .org at the end and not .com.

This computer stuff is frustrating sometimes.

Whatever--- All I know is how wonderful it is to have the Manual on the

website. Your input in all of that is just extraordinary as is the effort of

everyone who compiled and edited the Manual. The manual is something I live by

and

is one of the most important things we can have about our children!

And yea for Jay for putting that on the web for everyone. That took tons of

time and care. What a wonderful job.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Meg,

Your link does go to a medical page. The address to the foundation website

is not www.chargesyndrome.com but www.chargesyndrome.org. Now how silly is

that! The only difference is .org at the end and not .com.

This computer stuff is frustrating sometimes.

Whatever--- All I know is how wonderful it is to have the Manual on the

website. Your input in all of that is just extraordinary as is the effort of

everyone who compiled and edited the Manual. The manual is something I live by

and

is one of the most important things we can have about our children!

And yea for Jay for putting that on the web for everyone. That took tons of

time and care. What a wonderful job.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Meg

That's great, however the link in your post to the CHARGE Syndrome

Foundation website is taking you an on line medical guide!

Best wishes

Simon

[Guest guest]

Meg

That's great, however the link in your post to the CHARGE Syndrome

Foundation website is taking you an on line medical guide!

Best wishes

Simon

[Guest guest]

Meg

That's great, however the link in your post to the CHARGE Syndrome

Foundation website is taking you an on line medical guide!

Best wishes

Simon

[Guest guest]

That is incredibly exciting!!!!! So Adele has a smart *and* handsome

daddy?! I just got several issues of the Advance magazine in the mail from

the editor -- that cover photo is so amazing!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

How come this site www.chargesyndrome.com is connecting to a medical

site???

CHARGE Manual on the web!!

Hi everybody,

I have the great pleasure of being the person who gets to

announce that the CHARGE Syndrome Foundation website now has

CHARGE Syndrome: a management manual for parents available

on the Internet in pdf format.

You can access it section by section or download the entire

Manual. Photos and all! A HUGE thank you goes to Jay Bradup

(dad of the lovely Adele, recent cover girl on ADVANCE)

who's company Kineticcom.com did all the work for us.

While you are there (www.chargesyndrome.com), check out

other Foundation info - join the Foundation (the paltry

membership dues of $15 per year for a family helps keep the

Foundation going), join a committee, or just look at all

those wonderful photos of the kids.

We are just beginning the project of updating the Manual.

As sections are updated, we'll replace old sections. They

all have dates on them, so you can tell which sections are

new. Go, look, enjoy, send us comments (click on Future

Additions to the Manual at the bottom of the Manual page of

the website). This is so exciting, I can hardly stand it!

Meg

Meg Hefner, M.S.

Genetic Counselor

St. Louis, MO

hefnerma@... meg@...

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in

the CHARGE Syndrome Foundation; for information about the CHARGE

Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

How come this site www.chargesyndrome.com is connecting to a medical

site???

CHARGE Manual on the web!!

Hi everybody,

I have the great pleasure of being the person who gets to

announce that the CHARGE Syndrome Foundation website now has

CHARGE Syndrome: a management manual for parents available

on the Internet in pdf format.

You can access it section by section or download the entire

Manual. Photos and all! A HUGE thank you goes to Jay Bradup

(dad of the lovely Adele, recent cover girl on ADVANCE)

who's company Kineticcom.com did all the work for us.

While you are there (www.chargesyndrome.com), check out

other Foundation info - join the Foundation (the paltry

membership dues of $15 per year for a family helps keep the

Foundation going), join a committee, or just look at all

those wonderful photos of the kids.

We are just beginning the project of updating the Manual.

As sections are updated, we'll replace old sections. They

all have dates on them, so you can tell which sections are

new. Go, look, enjoy, send us comments (click on Future

Additions to the Manual at the bottom of the Manual page of

the website). This is so exciting, I can hardly stand it!

Meg

Meg Hefner, M.S.

Genetic Counselor

St. Louis, MO

hefnerma@... meg@...

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in

the CHARGE Syndrome Foundation; for information about the CHARGE

Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

How come this site www.chargesyndrome.com is connecting to a medical

site???

CHARGE Manual on the web!!

Hi everybody,

I have the great pleasure of being the person who gets to

announce that the CHARGE Syndrome Foundation website now has

CHARGE Syndrome: a management manual for parents available

on the Internet in pdf format.

You can access it section by section or download the entire

Manual. Photos and all! A HUGE thank you goes to Jay Bradup

(dad of the lovely Adele, recent cover girl on ADVANCE)

who's company Kineticcom.com did all the work for us.

While you are there (www.chargesyndrome.com), check out

other Foundation info - join the Foundation (the paltry

membership dues of $15 per year for a family helps keep the

Foundation going), join a committee, or just look at all

those wonderful photos of the kids.

We are just beginning the project of updating the Manual.

As sections are updated, we'll replace old sections. They

all have dates on them, so you can tell which sections are

new. Go, look, enjoy, send us comments (click on Future

Additions to the Manual at the bottom of the Manual page of

the website). This is so exciting, I can hardly stand it!

Meg

Meg Hefner, M.S.

Genetic Counselor

St. Louis, MO

hefnerma@... meg@...

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in

the CHARGE Syndrome Foundation; for information about the CHARGE

Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

,

In her excitement, Meg wrote .com instead of .org. :-)

BTW, the correct address is at the end of all the messages on the CHARGE

List.

n

Gilbert, A. wrote:

> How come this site www.chargesyndrome.com is connecting to a medical

> site???

--

n A Norbury, Executive Director

CHARGE Syndrome Foundation Inc

409 Vandiver Dr Ste 5-104

Columbia MO 65202-1563

voice/fax; families

email: marion@...

[Guest guest]

,

In her excitement, Meg wrote .com instead of .org. :-)

BTW, the correct address is at the end of all the messages on the CHARGE

List.

n

Gilbert, A. wrote:

> How come this site www.chargesyndrome.com is connecting to a medical

> site???

--

n A Norbury, Executive Director

CHARGE Syndrome Foundation Inc

409 Vandiver Dr Ste 5-104

Columbia MO 65202-1563

voice/fax; families

email: marion@...

[Guest guest]

,

In her excitement, Meg wrote .com instead of .org. :-)

BTW, the correct address is at the end of all the messages on the CHARGE

List.

n

Gilbert, A. wrote:

> How come this site www.chargesyndrome.com is connecting to a medical

> site???

--

n A Norbury, Executive Director

CHARGE Syndrome Foundation Inc

409 Vandiver Dr Ste 5-104

Columbia MO 65202-1563

voice/fax; families

email: marion@...

[Guest guest]

Hey there . . . I can't wait to forward your post to Jay. :-) We think

he's pretty swell, too.

Thanks!

--

>

> That is incredibly exciting!!!!! So Adele has a smart *and* handsome

> daddy?! I just got several issues of the Advance magazine in the

mail from

> the editor -- that cover photo is so amazing!

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

[Guest guest]

To all involved in making this happen - it's wonderful! Congrats!

Sharon from West Oz

>Hi everybody,

>I have the great pleasure of being the person who gets to

>announce that the CHARGE Syndrome Foundation website now has

>CHARGE Syndrome: a management manual for parents available

>on the Internet in pdf format.

>

>You can access it section by section or download the entire

>Manual. Photos and all! A HUGE thank you goes to Jay Bradup

>(dad of the lovely Adele, recent cover girl on ADVANCE)

>who’s company Kineticcom.com did all the work for us.

>

>While you are there (www.chargesyndrome.com), check out

>other Foundation info – join the Foundation (the paltry

>membership dues of $15 per year for a family helps keep the

>Foundation going), join a committee, or just look at all

>those wonderful photos of the kids.

>

>We are just beginning the project of updating the Manual.

>As sections are updated, we’ll replace old sections. They

>all have dates on them, so you can tell which sections are

>new. Go, look, enjoy, send us comments (click on Future

>Additions to the Manual at the bottom of the Manual page of

>the website). This is so exciting, I can hardly stand it!

>Meg

>

>Meg Hefner, M.S.

>Genetic Counselor

>St. Louis, MO

>hefnerma@... meg@...

>

>

>CHARGE SYNDROME LISTSERV PHOTO PAGE:

>http://www.imagestation.com/album/?id=2117043995

>

>Membership of this email support group does not constitute

>membership in the CHARGE Syndrome Foundation; for information about

>the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter),

>please contact marion@... or visit

>the web site at http://www.chargesyndrome.org

>

>8th International

>CHARGE Syndrome Conference, July, 2007. Information will be

>available at www.chargesyndrome.org or by calling 1-.

>