Re: Get-Togethers-Looking for Volunteers

[Guest guest]

I () am in Southern California ..... Laguna Beach. This is a beautiful

place to visit. People could have the reunion and the have a vacation with

family. We are 20 minutes to Disneyland, a little over an hour to Sea World,

hour and a half to LA and the best beaches in So.Cal are right here. Just a

suggestion for a West Coast event. I would be willing to help.

Peace,

Get-Togethers-Looking for Volunteers

Hello,

We are testing the waters to see if there is any interest in having regional

get-togethers. We're looking for people that would want to attend and those that

would be willing to help the owners/mgrs. of this list to help

plan/organize/etc. the get-togethers.

We are currently thinking that a guest speaker or two at each one would be

fantastic. Time for children to just be together and get to know each other. A

time for adults with the condition to get to know each other, and hopefully a

trip somewhere locally where all could attend as comfortably as reasonably

possible. Any other activity suggestions would be more than welcome, but we'd

like to keep it from being over-whelming and costly. All people attending of

course would have to pay their own way. At this point we have no way of offering

scholarships to attend or anything of the like. This will be our first one so

there's nothing to follow yet.

If you could email interest/not interest. Oh, sorry, we're thinking of the

springtime of 07 and to have the regional meetings either the same time or

concurrently. Obviously, we (owners/mgrs.) could not attend every one, but we

actually live quite far apart and hopefully at least we could attend at least

one. is in PA, Rick is in CO (right?), is in TN, and I am in NC,

but would be willing to help a northeast get-together is there's no one there to

help.

Okay, let's see who's interested in attending and organizing.

Thanks,

Kathy

[Guest guest]

Health permitting!!

We would be there, and I!

Tommi

's MOM Chicago, IL.

--- Moulton wrote:

> Hello,

>

> We are testing the waters to see if there is any

> interest in having regional get-togethers. We're

> looking for people that would want to attend and

> those that would be willing to help the owners/mgrs.

> of this list to help plan/organize/etc. the

> get-togethers.

>

> We are currently thinking that a guest speaker or

> two at each one would be fantastic. Time for

> children to just be together and get to know each

> other. A time for adults with the condition to get

> to know each other, and hopefully a trip somewhere

> locally where all could attend as comfortably as

> reasonably possible. Any other activity suggestions

> would be more than welcome, but we'd like to keep it

> from being over-whelming and costly. All people

> attending of course would have to pay their own way.

> At this point we have no way of offering

> scholarships to attend or anything of the like.

> This will be our first one so there's nothing to

> follow yet.

>

> If you could email interest/not interest. Oh,

> sorry, we're thinking of the springtime of 07 and to

> have the regional meetings either the same time or

> concurrently. Obviously, we (owners/mgrs.) could

> not attend every one, but we actually live quite far

> apart and hopefully at least we could attend at

> least one. is in PA, Rick is in CO

> (right?), is in TN, and I am in NC, but would

> be willing to help a northeast get-together is

> there's no one there to help.

>

> Okay, let's see who's interested in attending and

> organizing.

>

> Thanks,

>

> Kathy

>

> [Non-text portions of this message have been

> removed]

>

>

Tommi

's Mom

Chicago, IL. USA

__________________________________________________

[Guest guest]

OOPS, forget to mention I would help in whatever

needed, if we plan the event in Chicago, we would have

the oppurtunity to get some great speakers ie..Mclone,

Frim..... also I know airfare to Chicago from about

anywhere is pretty cheap, and I could scout hotels

etc....

Just let me know!!

Tommi

--- Moulton wrote:

> Hello,

>

> We are testing the waters to see if there is any

> interest in having regional get-togethers. We're

> looking for people that would want to attend and

> those that would be willing to help the owners/mgrs.

> of this list to help plan/organize/etc. the

> get-togethers.

>

> We are currently thinking that a guest speaker or

> two at each one would be fantastic. Time for

> children to just be together and get to know each

> other. A time for adults with the condition to get

> to know each other, and hopefully a trip somewhere

> locally where all could attend as comfortably as

> reasonably possible. Any other activity suggestions

> would be more than welcome, but we'd like to keep it

> from being over-whelming and costly. All people

> attending of course would have to pay their own way.

> At this point we have no way of offering

> scholarships to attend or anything of the like.

> This will be our first one so there's nothing to

> follow yet.

>

> If you could email interest/not interest. Oh,

> sorry, we're thinking of the springtime of 07 and to

> have the regional meetings either the same time or

> concurrently. Obviously, we (owners/mgrs.) could

> not attend every one, but we actually live quite far

> apart and hopefully at least we could attend at

> least one. is in PA, Rick is in CO

> (right?), is in TN, and I am in NC, but would

> be willing to help a northeast get-together is

> there's no one there to help.

>

> Okay, let's see who's interested in attending and

> organizing.

>

> Thanks,

>

> Kathy

>

> [Non-text portions of this message have been

> removed]

>

>

Tommi

's Mom

Chicago, IL. USA

__________________________________________________

[Guest guest]

Hi

The area sounds great. Maybe we could do a short poll...if you live in the

west, which state? Then we can see how many live where (that are interested in

attending only please.) Then from there we can add it up and see what is

central for most members on that side of the ocean?

Once we get the information I'll forward it and then we can make a call for more

volunteers and hopefully give a couple of places for people to decide on. How

does that sound? (But, if I was out on your side of the US, I would vote for

your area...:-)

I realized I didn't state what would probably be involved in putting this

together. A hotel would need to be blocked with x amount of rooms and hopefully

obtain a discount for those attending. Same goes for the hospitality room you'd

reserve (discount that is.) Also, a couple of places for trips and again,

hopefully enough people to obtain a group discount on admission and wheelchairs.

Contacting some professionals along with us, to see if we could reserve two

guest speakers (from the profession) and then maybe one or two members who are

versed in the subject would be willing to speak on the challenges,

positives/negatives of having this condition or having a child/loved on with it.

What they find works for doctor appt's, where to find resources, etc.

Then, once the extras are added (maybe food/light drink at the meet/greet and a

place, maybe a local park, for a relaxed get-together with hopefully a local

caterer to do grilling of hotdogs/hamburgs, and adding up the costs, then

tacking on a little more for those unexpected expenditures and whatever else

would be needed (name tags, etc.), and splitting it with the lowest number of

people willing to attend. We could either divide if any money left, or maybe a

raffle at the last day for any leftover monies? The people planning won't be

alone we would be with you the whole way and would appreciate a heads up on

what is planned.

Thanks !

Kathy

Get-Togethers-Looking for Volunteers

Hello,

We are testing the waters to see if there is any interest in having regional

get-togethers. We're looking for people that would want to attend and those that

would be willing to help the owners/mgrs. of this list to help

plan/organize/etc. the get-togethers.

We are currently thinking that a guest speaker or two at each one would be

fantastic. Time for children to just be together and get to know each other. A

time for adults with the condition to get to know each other, and hopefully a

trip somewhere locally where all could attend as comfortably as reasonably

possible. Any other activity suggestions would be more than welcome, but we'd

like to keep it from being over-whelming and costly. All people attending of

course would have to pay their own way. At this point we have no way of offering

scholarships to attend or anything of the like. This will be our first one so

there's nothing to follow yet.

If you could email interest/not interest. Oh, sorry, we're thinking of the

springtime of 07 and to have the regional meetings either the same time or

concurrently. Obviously, we (owners/mgrs.) could not attend every one, but we

actually live quite far apart and hopefully at least we could attend at least

one. is in PA, Rick is in CO (right?), is in TN, and I am in NC,

but would be willing to help a northeast get-together is there's no one there to

help.

Okay, let's see who's interested in attending and organizing.

Thanks,

Kathy

[Guest guest]

This is great Tommi! Frim would be quite a catch as a guest speaker. I'm not

familiar with the other name, but anyone with in-depth knowledge of this

condition and the issues it brings up would be fantastic. In my dream world the

guest speakers would each cover something different. If we could only get two

for each get-together, maybe one from the medical aspect and one from a social

aspect (a PT or maybe even better a rehab/physiatrist?)

Kathy

Re: Get-Togethers-Looking for Volunteers

OOPS, forget to mention I would help in whatever

needed, if we plan the event in Chicago, we would have

the oppurtunity to get some great speakers ie..Mclone,

Frim..... also I know airfare to Chicago from about

anywhere is pretty cheap, and I could scout hotels

etc....

Just let me know!!

Tommi

--- Moulton wrote:

> Hello,

>

> We are testing the waters to see if there is any

> interest in having regional get-togethers. We're

> looking for people that would want to attend and

> those that would be willing to help the owners/mgrs.

> of this list to help plan/organize/etc. the

> get-togethers.

>

> We are currently thinking that a guest speaker or

> two at each one would be fantastic. Time for

> children to just be together and get to know each

> other. A time for adults with the condition to get

> to know each other, and hopefully a trip somewhere

> locally where all could attend as comfortably as

> reasonably possible. Any other activity suggestions

> would be more than welcome, but we'd like to keep it

> from being over-whelming and costly. All people

> attending of course would have to pay their own way.

> At this point we have no way of offering

> scholarships to attend or anything of the like.

> This will be our first one so there's nothing to

> follow yet.

>

> If you could email interest/not interest. Oh,

> sorry, we're thinking of the springtime of 07 and to

> have the regional meetings either the same time or

> concurrently. Obviously, we (owners/mgrs.) could

> not attend every one, but we actually live quite far

> apart and hopefully at least we could attend at

> least one. is in PA, Rick is in CO

> (right?), is in TN, and I am in NC, but would

> be willing to help a northeast get-together is

> there's no one there to help.

>

> Okay, let's see who's interested in attending and

> organizing.

>

> Thanks,

>

> Kathy

>

> [Non-text portions of this message have been

> removed]

>

>

Tommi

's Mom

Chicago, IL. USA

__________________________________________________

[Guest guest]

Kathy,

We sure could try for Frim, Mclone is the " guru " of

tethered cord, SB. But, who knows take your poll, and

let me know what we need done, and I am more then

happy to do anything!

Thanks,

Tommi

--- Moulton wrote:

> This is great Tommi! Frim would be quite a catch as

> a guest speaker. I'm not familiar with the other

> name, but anyone with in-depth knowledge of this

> condition and the issues it brings up would be

> fantastic. In my dream world the guest speakers

> would each cover something different. If we could

> only get two for each get-together, maybe one from

> the medical aspect and one from a social aspect (a

> PT or maybe even better a rehab/physiatrist?)

>

> Kathy

> Re: Get-Togethers-Looking for

> Volunteers

>

>

> OOPS, forget to mention I would help in whatever

> needed, if we plan the event in Chicago, we would

> have

> the oppurtunity to get some great speakers

> ie..Mclone,

> Frim..... also I know airfare to Chicago from

> about

> anywhere is pretty cheap, and I could scout hotels

> etc....

> Just let me know!!

> Tommi

>

> --- Moulton wrote:

>

> > Hello,

> >

> > We are testing the waters to see if there is any

> > interest in having regional get-togethers. We're

> > looking for people that would want to attend and

> > those that would be willing to help the

> owners/mgrs.

> > of this list to help plan/organize/etc. the

> > get-togethers.

> >

> > We are currently thinking that a guest speaker

> or

> > two at each one would be fantastic. Time for

> > children to just be together and get to know

> each

> > other. A time for adults with the condition to

> get

> > to know each other, and hopefully a trip

> somewhere

> > locally where all could attend as comfortably as

> > reasonably possible. Any other activity

> suggestions

> > would be more than welcome, but we'd like to

> keep it

> > from being over-whelming and costly. All people

> > attending of course would have to pay their own

> way.

> > At this point we have no way of offering

> > scholarships to attend or anything of the like.

> > This will be our first one so there's nothing to

> > follow yet.

> >

> > If you could email interest/not interest. Oh,

> > sorry, we're thinking of the springtime of 07

> and to

> > have the regional meetings either the same time

> or

> > concurrently. Obviously, we (owners/mgrs.) could

> > not attend every one, but we actually live quite

> far

> > apart and hopefully at least we could attend at

> > least one. is in PA, Rick is in CO

> > (right?), is in TN, and I am in NC, but

> would

> > be willing to help a northeast get-together is

> > there's no one there to help.

> >

> > Okay, let's see who's interested in attending

> and

> > organizing.

> >

> > Thanks,

> >

> > Kathy

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

> Tommi

> 's Mom

> Chicago, IL. USA

>

> __________________________________________________

>

[Guest guest]

Would love to come to one in Chicago. I live in NY so it would be very

conveinient.

Re: Get-Togethers-Looking for

> Volunteers

>

>

> OOPS, forget to mention I would help in whatever

> needed, if we plan the event in Chicago, we would

> have

> the oppurtunity to get some great speakers

> ie..Mclone,

> Frim..... also I know airfare to Chicago from

> about

> anywhere is pretty cheap, and I could scout hotels

> etc....

> Just let me know!!

> Tommi

>

> --- Moulton wrote:

>

> > Hello,

> >

> > We are testing the waters to see if there is any

> > interest in having regional get-togethers. We're

> > looking for people that would want to attend and

> > those that would be willing to help the

> owners/mgrs.

> > of this list to help plan/organize/etc. the

> > get-togethers.

> >

> > We are currently thinking that a guest speaker

> or

> > two at each one would be fantastic. Time for

> > children to just be together and get to know

> each

> > other. A time for adults with the condition to

> get

> > to know each other, and hopefully a trip

> somewhere

> > locally where all could attend as comfortably as

> > reasonably possible. Any other activity

> suggestions

> > would be more than welcome, but we'd like to

> keep it

> > from being over-whelming and costly. All people

> > attending of course would have to pay their own

> way.

> > At this point we have no way of offering

> > scholarships to attend or anything of the like.

> > This will be our first one so there's nothing to

> > follow yet.

> >

> > If you could email interest/not interest. Oh,

> > sorry, we're thinking of the springtime of 07

> and to

> > have the regional meetings either the same time

> or

> > concurrently. Obviously, we (owners/mgrs.) could

> > not attend every one, but we actually live quite

> far

> > apart and hopefully at least we could attend at

> > least one. is in PA, Rick is in CO

> > (right?), is in TN, and I am in NC, but

> would

> > be willing to help a northeast get-together is

> > there's no one there to help.

> >

> > Okay, let's see who's interested in attending

> and

> > organizing.

> >

> > Thanks,

> >

> > Kathy

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

> Tommi

> 's Mom

> Chicago, IL. USA

>

> __________________________________________________

>

[Guest guest]

in this e-mail you were talking about get toghters. i think the tethered

cord has a national group that has a yearly conferance a different place

each year. i know the spina bifida group has there national office in

washington d.c. and has a conferance every year at a different place. it is

in june and i think it was 4-5 days long, they have about a thousand each

year. its hard to find a hotel large enougth and that can handle at least

200 wheel chairs. some one in the e-mail i 'm ansering said they wearn't

familer with SB or spina bifida. its the birth defect that happens within

the first 24 hours after the baby is conceved wayberore youknow that you are

pregent, thats why they recamend any woman of child bearing age who could

become pregant to take 400 micrograms of folic acid for 2-3 months before

becoming pregant and throw your pregancy to help prevent spina bifida which

is were the spine is not closed compleatly, it could result in compleat

parlized to just not being able to move your big toe or a puff of hair along

the spine. when they close the spine orstaiten a curveture is when lots of

your tethering happens when the scar tissue attaches to the spine and then

as you grow tallerit pulls on the spine nd nerves and etc. thats when you

have to do something with the thered cord so that it can grow. look up

s[ina bifida on the internet and -or write me for more information.. hope

this helps explain it a little. lots of love and prayers to everyone, lois

[Guest guest]

Any thoughts about making the tsc group meeting part of the SB meeting??

AG

>

>Reply-To: tetheredspinalcord

>To: <tetheredspinalcord >, ,

>

>Subject: Re: Get-Togethers-Looking for Volunteers

>Date: Tue, 22 Aug 2006 00:59:50 -0400

>

>in this e-mail you were talking about get toghters. i think the tethered

>cord has a national group that has a yearly conferance a different place

>each year. i know the spina bifida group has there national office in

>washington d.c. and has a conferance every year at a different place. it

>is

>in june and i think it was 4-5 days long, they have about a thousand each

>year. its hard to find a hotel large enougth and that can handle at least

>200 wheel chairs. some one in the e-mail i 'm ansering said they wearn't

>familer with SB or spina bifida. its the birth defect that happens within

>the first 24 hours after the baby is conceved wayberore youknow that you

>are

>pregent, thats why they recamend any woman of child bearing age who could

>become pregant to take 400 micrograms of folic acid for 2-3 months before

>becoming pregant and throw your pregancy to help prevent spina bifida which

>is were the spine is not closed compleatly, it could result in compleat

>parlized to just not being able to move your big toe or a puff of hair

>along

>the spine. when they close the spine orstaiten a curveture is when lots of

>your tethering happens when the scar tissue attaches to the spine and then

>as you grow tallerit pulls on the spine nd nerves and etc. thats when you

>have to do something with the thered cord so that it can grow. look up

>s[ina bifida on the internet and -or write me for more information.. hope

>this helps explain it a little. lots of love and prayers to everyone,

>lois

[Guest guest]

Sumchyk was found muttering these words:

I would be interested as well and am in Chicago too.

> OOPS, forget to mention I would help in whatever

> needed, if we plan the event in Chicago, we would have

> the oppurtunity to get some great speakers ie..Mclone,

> Frim..... also I know airfare to Chicago from about

> anywhere is pretty cheap, and I could scout hotels

> etc....

> Just let me know!!

> Tommi

>

> --- Moulton wrote:

>

> > Hello,

> >

> > We are testing the waters to see if there is any

> > interest in having regional get-togethers. We're

> > looking for people that would want to attend and

> > those that would be willing to help the owners/mgrs.

> > of this list to help plan/organize/etc. the

> > get-togethers.

> >

> > We are currently thinking that a guest speaker or

> > two at each one would be fantastic. Time for

> > children to just be together and get to know each

> > other. A time for adults with the condition to get

> > to know each other, and hopefully a trip somewhere

> > locally where all could attend as comfortably as

> > reasonably possible. Any other activity suggestions

> > would be more than welcome, but we'd like to keep it

> > from being over-whelming and costly. All people

> > attending of course would have to pay their own way.

> > At this point we have no way of offering

> > scholarships to attend or anything of the like.

> > This will be our first one so there's nothing to

> > follow yet.

> >

> > If you could email interest/not interest. Oh,

> > sorry, we're thinking of the springtime of 07 and to

> > have the regional meetings either the same time or

> > concurrently. Obviously, we (owners/mgrs.) could

> > not attend every one, but we actually live quite far

> > apart and hopefully at least we could attend at

> > least one. is in PA, Rick is in CO

> > (right?), is in TN, and I am in NC, but would

> > be willing to help a northeast get-together is

> > there's no one there to help.

> >

> > Okay, let's see who's interested in attending and

> > organizing.

> >

> > Thanks,

> >

> > Kathy

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> Tommi

> 's Mom

> Chicago, IL. USA

>

> __________________________________________________

>

[Guest guest]

,

Where you from in Chicago?

We are in the south suburbs, about a block off of

Chicago.

Tommi

--- wrote:

> Sumchyk was found muttering these words:

>

> I would be interested as well and am in Chicago too.

>

>

>

> > OOPS, forget to mention I would help in whatever

> > needed, if we plan the event in Chicago, we would

> have

> > the oppurtunity to get some great speakers

> ie..Mclone,

> > Frim..... also I know airfare to Chicago from

> about

> > anywhere is pretty cheap, and I could scout hotels

> > etc....

> > Just let me know!!

> > Tommi

> >

> > --- Moulton wrote:

> >

> > > Hello,

> > >

> > > We are testing the waters to see if there is any

> > > interest in having regional get-togethers.

> We're

> > > looking for people that would want to attend and

> > > those that would be willing to help the

> owners/mgrs.

> > > of this list to help plan/organize/etc. the

> > > get-togethers.

> > >

> > > We are currently thinking that a guest speaker

> or

> > > two at each one would be fantastic. Time for

> > > children to just be together and get to know

> each

> > > other. A time for adults with the condition to

> get

> > > to know each other, and hopefully a trip

> somewhere

> > > locally where all could attend as comfortably as

> > > reasonably possible. Any other activity

> suggestions

> > > would be more than welcome, but we'd like to

> keep it

> > > from being over-whelming and costly. All people

> > > attending of course would have to pay their own

> way.

> > > At this point we have no way of offering

> > > scholarships to attend or anything of the like.

> > > This will be our first one so there's nothing to

> > > follow yet.

> > >

> > > If you could email interest/not interest. Oh,

> > > sorry, we're thinking of the springtime of 07

> and to

> > > have the regional meetings either the same time

> or

> > > concurrently. Obviously, we (owners/mgrs.)

> could

> > > not attend every one, but we actually live quite

> far

> > > apart and hopefully at least we could attend at

> > > least one. is in PA, Rick is in CO

> > > (right?), is in TN, and I am in NC, but

> would

> > > be willing to help a northeast get-together is

> > > there's no one there to help.

> > >

> > > Okay, let's see who's interested in attending

> and

> > > organizing.

> > >

> > > Thanks,

> > >

> > > Kathy

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

> >

> >

> > Tommi

> > 's Mom

> > Chicago, IL. USA

> >

> > __________________________________________________

> >

[Guest guest]

Hi

(Not sure what AG stands for, so please excuse no name...) As stated the

SB conference does have a portion of their conference geared toward tethered

cord. We of course encourage anyone who can attend and feels they information

they provide would be beneficial (plus, the bonus of meeting other people!) to

attend the Nat'l SB conference.

I will tell you that in the past (quite a while ago) we did contact the SB

organization via their site and we didn't get the warmest response. However,

that truly was years ago and as far as I know, beyond , I don't know if

anyone has contacted them to see if they would be interested at this point to

allow us be a branch from them, a joint effort, anything.

I will discuss contacting them again with Rick, and and we'll let

everyone know. But, joining in with their conference would not be anything I

would think would work for their conference coming in June of 2007. I would

" think " that an organization of that size would already have everything in place

and contracted for the 2007 conference. However, again, if anyone is interested

in attending I'm sure the information is on their website.

We'll let everyone know after talking and possibly contacting the SBO. Thank

you for your input, it's always welcome and appreciated.

Kathy

Re: Get-Togethers-Looking for Volunteers

>Date: Tue, 22 Aug 2006 00:59:50 -0400

>

>in this e-mail you were talking about get toghters. i think the tethered

>cord has a national group that has a yearly conferance a different place

>each year. i know the spina bifida group has there national office in

>washington d.c. and has a conferance every year at a different place. it

>is

>in june and i think it was 4-5 days long, they have about a thousand each

>year. its hard to find a hotel large enougth and that can handle at least

>200 wheel chairs. some one in the e-mail i 'm ansering said they wearn't

>familer with SB or spina bifida. its the birth defect that happens within

>the first 24 hours after the baby is conceved wayberore youknow that you

>are

>pregent, thats why they recamend any woman of child bearing age who could

>become pregant to take 400 micrograms of folic acid for 2-3 months before

>becoming pregant and throw your pregancy to help prevent spina bifida which

>is were the spine is not closed compleatly, it could result in compleat

>parlized to just not being able to move your big toe or a puff of hair

>along

>the spine. when they close the spine orstaiten a curveture is when lots of

>your tethering happens when the scar tissue attaches to the spine and then

>as you grow tallerit pulls on the spine nd nerves and etc. thats when you

>have to do something with the thered cord so that it can grow. look up

>s[ina bifida on the internet and -or write me for more information.. hope

>this helps explain it a little. lots of love and prayers to everyone,

>lois

[Guest guest]

Hey All,

I'm just catching up on weeks of unread email...I grew up in the Chicago area

and McClone was my doc most of my childhood, I'd love to hear him speak...

I live in KY now, I'd love to see something like this take place

a Ramsey

Moulton wrote:

This is great Tommi! Frim would be quite a catch as a guest speaker.

I'm not familiar with the other name, but anyone with in-depth knowledge of this

condition and the issues it brings up would be fantastic. In my dream world the

guest speakers would each cover something different. If we could only get two

for each get-together, maybe one from the medical aspect and one from a social

aspect (a PT or maybe even better a rehab/physiatrist?)

Kathy

Re: Get-Togethers-Looking for Volunteers

OOPS, forget to mention I would help in whatever

needed, if we plan the event in Chicago, we would have

the oppurtunity to get some great speakers ie..Mclone,

Frim..... also I know airfare to Chicago from about

anywhere is pretty cheap, and I could scout hotels

etc....

Just let me know!!

Tommi

--- Moulton wrote:

> Hello,

>

> We are testing the waters to see if there is any

> interest in having regional get-togethers. We're

> looking for people that would want to attend and

> those that would be willing to help the owners/mgrs.

> of this list to help plan/organize/etc. the

> get-togethers.

>

> We are currently thinking that a guest speaker or

> two at each one would be fantastic. Time for

> children to just be together and get to know each

> other. A time for adults with the condition to get

> to know each other, and hopefully a trip somewhere

> locally where all could attend as comfortably as

> reasonably possible. Any other activity suggestions

> would be more than welcome, but we'd like to keep it

> from being over-whelming and costly. All people

> attending of course would have to pay their own way.

> At this point we have no way of offering

> scholarships to attend or anything of the like.

> This will be our first one so there's nothing to

> follow yet.

>

> If you could email interest/not interest. Oh,

> sorry, we're thinking of the springtime of 07 and to

> have the regional meetings either the same time or

> concurrently. Obviously, we (owners/mgrs.) could

> not attend every one, but we actually live quite far

> apart and hopefully at least we could attend at

> least one. is in PA, Rick is in CO

> (right?), is in TN, and I am in NC, but would

> be willing to help a northeast get-together is

> there's no one there to help.

>

> Okay, let's see who's interested in attending and

> organizing.

>

> Thanks,

>

> Kathy

>

> [Non-text portions of this message have been

> removed]

>

>

Tommi

's Mom

Chicago, IL. USA

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