Re: In hopes of increasing knowledge of CHARGE

[Guest guest]

I think its great to get more info out there about CHARGE and I hope

tons of magazines and newspapers pick up your story. I know I have

written to many parenting type magazines in hope they pick it up. I

think its something that needs to be told and I wish you all the

luck in the world!!

If you have any questions feel free to email me or post it on the

group.

Hugs to you and your family,

Crystal mom to (10), (3), and Eva (17 month CHARGEr)

wife to Dan

>

> As you all know CHARGE is still relatively unknown and

> misunderstood. My son, n , lived with CHARGE from July

> 19-Sep 03 of last year. In his memory I'm hoping to expand

> knowledge of this syndrome/association.

>

> Not only am I writing articles to submit to magazines and

> newspapers, but I'm also working with some talented people on a

> website. My idea is for a place where we can have a one-stop shop

> if you will. Somewhere where we can share information, be

provided

> helpful links, learn, grieve and grow.

>

> I'm asking for opinions, stories and thoughts. I don't want to

> reinvent the wheel if you all feel www.chargesyndrome.org fits the

> bill. I'm certainly not trying to compete with them either only

to

> honor n and help those who live/deal with CHARGE.

>

> Please let me know what you think. Would this be helpful? Is it

> needed? If so, what information would you find helpful? What

stuff

> would you like to see there?

>

> Thank you all for your help. My heart and prayers go out to you

> all. You're all heroes in my mind.

>

> Dave

> father of n

>

[Guest guest]

i like ur idea like everyone elses to what about a chare tips on stuff so

like go in to the archives search out say behaviours or any of the toher key

charge issues and then take all the posts that talk about them and take the

most important tips and put them into the site to so then even though we can

all share stories here people who arent on the list can go ther eto read the

tips to or people who dotn ahve much time for the list and stuff hugs ellen

>

> I think its great to get more info out there about CHARGE and I hope

> tons of magazines and newspapers pick up your story. I know I have

> written to many parenting type magazines in hope they pick it up. I

> think its something that needs to be told and I wish you all the

> luck in the world!!

> If you have any questions feel free to email me or post it on the

> group.

> Hugs to you and your family,

> Crystal mom to (10), (3), and Eva (17 month CHARGEr)

> wife to Dan

>

>

>

> >

> > As you all know CHARGE is still relatively unknown and

> > misunderstood. My son, n , lived with CHARGE from July

> > 19-Sep 03 of last year. In his memory I'm hoping to expand

> > knowledge of this syndrome/association.

> >

> > Not only am I writing articles to submit to magazines and

> > newspapers, but I'm also working with some talented people on a

> > website. My idea is for a place where we can have a one-stop shop

> > if you will. Somewhere where we can share information, be

> provided

> > helpful links, learn, grieve and grow.

> >

> > I'm asking for opinions, stories and thoughts. I don't want to

> > reinvent the wheel if you all feel www.chargesyndrome.org fits the

> > bill. I'm certainly not trying to compete with them either only

> to

> > honor n and help those who live/deal with CHARGE.

> >

> > Please let me know what you think. Would this be helpful? Is it

> > needed? If so, what information would you find helpful? What

> stuff

> > would you like to see there?

> >

> > Thank you all for your help. My heart and prayers go out to you

> > all. You're all heroes in my mind.

> >

> > Dave

> > father of n

> >

>

>

>

[Guest guest]

Ellen-

Yep. I like your plan. There have been tons of great ideas!

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

ellen howe

Sent: Wednesday, September 13, 2006 1:03 AM

To: CHARGE

Subject: Re: Re: In hopes of increasing knowledge of CHARGE

i like ur idea like everyone elses to what about a chare tips on stuff so

like go in to the archives search out say behaviours or any of the toher key

charge issues and then take all the posts that talk about them and take the

most important tips and put them into the site to so then even though we can

all share stories here people who arent on the list can go ther eto read the

tips to or people who dotn ahve much time for the list and stuff hugs ellen

[Guest guest]

Ellen,

I liked what you said about ³not everyone knows what it is like in here². I

am assuming you meant in your CHARGE head/body. That is a profound

statement.

Thanks, deary.

pam

[Guest guest]

Thank you for saying so. I have not seen the memorial sites but

would like to. If anyone has information regarding them, please

pass it forward.

I certainly see the value of fundraising. I had considered going

solely this route and actually tried contacting the organization

back in the winter. My plan was to run a marathon a month...CHARGE

4 n... I never received a response so I ran on my own and

donated money to the hospital instead. Maybe in time this concept

can grow and funds can come from it. I think it would be nice to

help families attend the conference, and provide support for care.

Only time will tell.

My background isn't medical or phychological. I'm a pilot in the

military. Just trying to make a difference for a cause I've had

personal experience with.

Dave

>

> Dear Dave,

> If I have not said so, I am so sorry for n's passing. You

may not yet

> have seen some of the lovely memorial websites that have been

created. I'm

> sure others will provide you with links.

> I believe that if you can give us a couple of days, you will find

we can

> suggest many, many areas that would benefit from the time and

attention of a

> willing soul. From my perspective, adult advocacy is a major

issue.

> Fundraising is key for many. Certainly articles that educate the

general population

> about CHARGE are extremely helpful.

> As you are aware, CHARGE is a lifelong situation, of similar, but

varying

> challenges, and in varying degrees, and noone has all the help

they could use.

>

> I am not aware of your history; if you have a medical, social, or

> psychology, other professional background, or if you are free to

travel, etc.

> So, you've come to the right place for open dialogue, and exchange

of ideas.

> I'm sure n is honored by your commitment to contribute.

> Peace,

> in Ma. (, 21 yrs CHARGE)

>

>

>

>

[Guest guest]

That's a great idea. Finding people who had any idea was difficult

for us too. I know it's not an uncommon issue. CHARGE is just so

rare and so few professionals know anything about it. There's got

to be a better way out there. This is the struggle...shouldn't

there be an answer?

Dave

> >

> > As you all know CHARGE is still relatively unknown and

> > misunderstood. My son, n , lived with CHARGE from

July

> > 19-Sep 03 of last year. In his memory I'm hoping to expand

> > knowledge of this syndrome/association.

> >

> > Not only am I writing articles to submit to magazines and

> > newspapers, but I'm also working with some talented people on a

> > website. My idea is for a place where we can have a one-stop

shop

> > if you will. Somewhere where we can share information, be

> provided

> > helpful links, learn, grieve and grow.

> >

> > I'm asking for opinions, stories and thoughts. I don't want to

> > reinvent the wheel if you all feel www.chargesyndrome.org fits

the

> > bill. I'm certainly not trying to compete with them either only

> to

> > honor n and help those who live/deal with CHARGE.

> >

> > Please let me know what you think. Would this be helpful? Is

it

> > needed? If so, what information would you find helpful? What

> stuff

> > would you like to see there?

> >

> > Thank you all for your help. My heart and prayers go out to you

> > all. You're all heroes in my mind.

> >

> > Dave

> > father of n

> >

>

[Guest guest]

A card catalog if you will. Or a google-like search engine that

could compile useful articles. A staging ground that's easily

accessible... I like the 411 idea.

There's got to be smart computer savvy folks that could figure out

how to do this.

Dave

>

> Dave -

>

> I think the CHARGE Foundation site is outstanding so repeating

anything

> that's there is not necessary. But creating a complimentary site

could be

> helpful. Weir has done something similar by creating

> www.chargesyndrome.info <http://www.chargesyndrome.info/> that

gives her

> daughter's history. It complements what is on the Foundation's

site by

> giving a real-life example to go with all of the general info

provided by

> the Foundation.

>

>

>

> Every once-in-a-while someone considers changing the list-serve

too and we

> usually decide that this is working just fine as it is and leave

it be.

>

>

>

> I think your plan is a good one. But I think you should give real

careful

> consideration to what is already out there and how you can best

compliment

> that rather than compete - which is exactly what you're doing and

why you

> brought the question to the list! So. I'm not being very helpful -

just

> confirming that you're on the right track.

>

>

>

> We haven't done a good job of building the " Files " section of the

Yahoo

> site. Perhaps that's an avenue that hasn't been fully explored and

> developed. It'd be nice to have a place for all of the tidbits of

info -

> feeding tips, Gtube recipes, walking tips, how to keep a young

child's

> glasses and hearing aides on, how to work with an IEP team on

issues

> specific to our kids. What about a site that is full of your

articles and

> those submitted by others that have tips and info specific to

CHARGE? Just

> brainstorming here to start the creative juices flowing. People

could share

> articles about their experiences with all things CHARGE-related.

We could

> post photos and info about procedures our kids endure so that the

kids can

> have an idea of what to expect. We can post our kids IEP

documents (with

> names removed) for examples for other families to see and use.

You wouldn't

> have to author it all, but you could be the " editor " who takes

incoming

> information, approves it for appropriateness, and posts it on the

site. So

> it could be the 411 of real-life tips - not the Foundation's

expert info,

> not any one family's story, not the list-serve's archives which

require

> searching - but a compilation of CHARGE experience and wisdom from

around

> the globe, across the lifespan, and addressing all areas of life -

easily

> accessible because it's all logically filed and clearly identified.

>

>

>

> I'm sorry for your loss, but I'm touched that you've chosen to

honor

> n's short life in such a way. Those of us still living with

CHARGE

> are strapped for energy and attention to this kind of thing. We

talk a lot

> about our ideas for sharing info, but no one has the time or

energy to make

> it happen. Whatever you decide to do, you can be such a help to

us. And at

> the same time find a way to channel your grief into something

productive and

> satisfying. In advance, thank you.

>

>

>

> Michele W

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

>

>

>

>

>

>

>

>

[Guest guest]

Bonnie

I will. I may already have something but it's going to take some

time to access. I'm deployed to the desert right now and getting to

my files is proving to be a task of monumental proportions.

Dave

>

> Dave,

>

> When you write your article about n would you please send it

to n

> at marion@... so that she might be able to put it in the CHARGE

> Foundation newsletter?

>

>

> Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

>

>

>

[Guest guest]

did ya'll know that google is on the brink of putting out a search that will

allow you to search through print media archives?

it's set to become available soemtime this year... but it would only work

for literature that was in their network or whatever... maybe Google

*is*the company to look to for the technology to do this

just a thought

>

>

>

> A card catalog if you will. Or a google-like search engine that

> could compile useful articles. A staging ground that's easily

> accessible... I like the 411 idea.

>

> There's got to be smart computer savvy folks that could figure out

> how to do this.

>

> Dave

>

>

> >

> > Dave -

> >

> > I think the CHARGE Foundation site is outstanding so repeating

> anything

> > that's there is not necessary. But creating a complimentary site

> could be

> > helpful. Weir has done something similar by creating

> > www.chargesyndrome.info <http://www.chargesyndrome.info/> that

> gives her

> > daughter's history. It complements what is on the Foundation's

> site by

> > giving a real-life example to go with all of the general info

> provided by

> > the Foundation.

> >

> >

> >

> > Every once-in-a-while someone considers changing the list-serve

> too and we

> > usually decide that this is working just fine as it is and leave

> it be.

> >

> >

> >

> > I think your plan is a good one. But I think you should give real

> careful

> > consideration to what is already out there and how you can best

> compliment

> > that rather than compete - which is exactly what you're doing and

> why you

> > brought the question to the list! So. I'm not being very helpful -

> just

> > confirming that you're on the right track.

> >

> >

> >

> > We haven't done a good job of building the " Files " section of the

> Yahoo

> > site. Perhaps that's an avenue that hasn't been fully explored and

> > developed. It'd be nice to have a place for all of the tidbits of

> info -

> > feeding tips, Gtube recipes, walking tips, how to keep a young

> child's

> > glasses and hearing aides on, how to work with an IEP team on

> issues

> > specific to our kids. What about a site that is full of your

> articles and

> > those submitted by others that have tips and info specific to

> CHARGE? Just

> > brainstorming here to start the creative juices flowing. People

> could share

> > articles about their experiences with all things CHARGE-related.

> We could

> > post photos and info about procedures our kids endure so that the

> kids can

> > have an idea of what to expect. We can post our kids IEP

> documents (with

> > names removed) for examples for other families to see and use.

> You wouldn't

> > have to author it all, but you could be the " editor " who takes

> incoming

> > information, approves it for appropriateness, and posts it on the

> site. So

> > it could be the 411 of real-life tips - not the Foundation's

> expert info,

> > not any one family's story, not the list-serve's archives which

> require

> > searching - but a compilation of CHARGE experience and wisdom from

> around

> > the globe, across the lifespan, and addressing all areas of life -

> easily

> > accessible because it's all logically filed and clearly identified.

> >

> >

> >

> > I'm sorry for your loss, but I'm touched that you've chosen to

> honor

> > n's short life in such a way. Those of us still living with

> CHARGE

> > are strapped for energy and attention to this kind of thing. We

> talk a lot

> > about our ideas for sharing info, but no one has the time or

> energy to make

> > it happen. Whatever you decide to do, you can be such a help to

> us. And at

> > the same time find a way to channel your grief into something

> productive and

> > satisfying. In advance, thank you.

> >

> >

> >

> > Michele W

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

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Dear Dave,

You're Great!!! For many reasons! Glad you're with us (and not against

us-lol)!

Thank you for everything you do.

in Ma. (, 21 years)

[Guest guest]

Start a CHARGE web ring. That way everyone who has a charge related site can

automaticaly be linked to other CHARGE related websites

Chantelle

--

My spelling's kinda wobbly. It's good spelling but the letters wobble and

end up in the wrong places. - Winnie the Pooh

[Guest guest]

There is actually already a ring Chantelle, I just haven't been good about

promoting it enough...

never enough time ha ha...

>

> Start a CHARGE web ring. That way everyone who has a charge related

> site can

> automaticaly be linked to other CHARGE related websites

>

> Chantelle

>

> --

> My spelling's kinda wobbly. It's good spelling but the letters wobble and

> end up in the wrong places. - Winnie the Pooh

>

>

[Guest guest]

Chantelle

Good idea. Not sure how that works....will have to ask some computer smart

folks.

Dave

Chantelle McLaren wrote:

Start a CHARGE web ring. That way everyone who has a charge related

site can

automaticaly be linked to other CHARGE related websites

Chantelle

--

My spelling's kinda wobbly. It's good spelling but the letters wobble and

end up in the wrong places. - Winnie the Pooh

[Guest guest]

Tell me more, tell me more. How does it work. How do you like to it? How

now brown cow?

Dave

Weir wrote:

There is actually already a ring Chantelle, I just haven't been good

about

promoting it enough...

never enough time ha ha...

>

> Start a CHARGE web ring. That way everyone who has a charge related

> site can

> automaticaly be linked to other CHARGE related websites

>

> Chantelle

>

> --

> My spelling's kinda wobbly. It's good spelling but the letters wobble and

> end up in the wrong places. - Winnie the Pooh

>

>

[Guest guest]

You know how now brown cow? OMG my friends and i used to say that in grade 3

all the time lol!

That and 99 was like EVERYONES favorite number hehe.

Ahhh memories of grade three

>

>

>

> Tell me more, tell me more. How does it work. How do you like to

> it? How now brown cow?

>

> Dave

>

> Weir wrote:

> There is actually already a ring Chantelle, I just haven't been

> good about

> promoting it enough...

> never enough time ha ha...

>

>

>

> >

> > Start a CHARGE web ring. That way everyone who has a charge related

> > site can

> > automaticaly be linked to other CHARGE related websites

> >

> > Chantelle

> >

> > --

> > My spelling's kinda wobbly. It's good spelling but the letters wobble

> and

> > end up in the wrong places. - Winnie the Pooh

> >

> >