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Hey Gail,

Next week would be good also. The Pow-Wow you are

talking about is the event they hold at Otsiningo

Park, right? We have been wanting to go to that, but

haven't been able to. Last year we made a spur of the

moment trip to NYC and ended up on TV, but that is

another story. We are planning our first VACATION for

5 years middle of May :-), and I am hoping we won't

miss it this year...Margaret, just let us know when

your next visit will be, and we will DEFINITELY all

get together.

Deb

--- smilinggail@... wrote:

> In a message dated 4/27/01 7:23:04 AM Eastern

> Daylight Time,

> Deb,

> Next week is full with appointments and we are going

> to Newark on Friday and

> Philly on Saturday. Can we make it the next week.

> We will be home the night

> of the 9th, so anytime after that. The Pow -Wow is

> held every summer. Lot's

> of Native American tribes are there and it's really

> cool for the kids. They

> do music and dancing and have really good

> food...buffalo burgers, white bean

> and corn wraps and stuff like that.

> Gail

>

__________________________________________________

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  • 4 months later...

It depends where the bar is!

Xena Dion wrote:

> I think it would be great to meet within the party on Friday evening, perhaps

Senate members can identify themselves with a white carnation, flower in hair or

something equally amusing and 'different' although I suspect we will graduate

towards each other anyway, would that work?

> Regards, Xena Dion

>

> >>> Toity.Deave@... 10/12/01 12:27pm >>>

> Yes, I was mentioning it to at the beginning of the week that we ought

ot

> meet. Just a matter of when and where!

>

> Toity

>

> On Thu, 11 Oct 2001 19:59:37 +0100

> Bidmead <christine@...> wrote:

>

> > Good idea Ruth, perhaps we could all arrange to meet somewhere. Watch the

> > messages/notice board at conference. Let's see if we can arrange something.

> >

> > Conference

> >

> >

> > > Are Senate members intending to meet at CPHVA conference? It would be

> > > good to put faces to names.

> > >

> > >

> > >

> > >

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  • 2 weeks later...

Good idea Ruth, perhaps we could all arrange to meet somewhere. Watch the

messages/notice board at conference. Let's see if we can arrange something.

Conference

> Are Senate members intending to meet at CPHVA conference? It would be

> good to put faces to names.

>

>

>

>

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Ruth, I don't know why this message only came through to me today, but you

are right: we should try to meet up.

I am definitely going to be there on Friday; might get there for Thursday if

only to hear Alan Milburn (If he dares to show his face, unless he has been

convinced about the statute by then!). Last time secretary of state

appeared at the then HVA conference, she (Virginia Bottomley) was booed: I

can't remember the exact context, perhaps Margaret can. I do recall that a

student health visitor asking her why she was only talking about illnesses

and lifestyles, when everyone else in the conference was talking about how

housing, income etc affected health; to which the minister replied that she

was here to talk only about health, because that was her brief; other

departments dealt with those other issues! After that incident, though, she

became a very good of friend of health visiting: which goes to show that

you don't need to be obsequious to get respect (soemone should tell

Spiller).

Four years ago, we

ruthngrant wrote:

> Are Senate members intending to meet at CPHVA conference? It would be

> good to put faces to names.

>

>

>

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Yes, I was mentioning it to at the beginning of the week that we ought ot

meet. Just a matter of when and where!

Toity

On Thu, 11 Oct 2001 19:59:37 +0100

Bidmead <christine@...> wrote:

> Good idea Ruth, perhaps we could all arrange to meet somewhere. Watch the

> messages/notice board at conference. Let's see if we can arrange something.

>

> Conference

>

>

> > Are Senate members intending to meet at CPHVA conference? It would be

> > good to put faces to names.

> >

> >

> >

> >

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I can't remember the context of VB at conference but I di remember that she was

allocated double time and still managed to overrun by 30 mins or so and had not

got

round to answering any of the questions she was asked with a proper answer! No

surprise, I know but very frustrating.

Toity

On Thu, 11 Oct 2001 20:44:25 +0100

Cowley <sarah@...> wrote:

> Ruth, I don't know why this message only came through to me today, but you

> are right: we should try to meet up.

>

> I am definitely going to be there on Friday; might get there for Thursday if

> only to hear Alan Milburn (If he dares to show his face, unless he has been

> convinced about the statute by then!). Last time secretary of state

> appeared at the then HVA conference, she (Virginia Bottomley) was booed: I

> can't remember the exact context, perhaps Margaret can. I do recall that a

> student health visitor asking her why she was only talking about illnesses

> and lifestyles, when everyone else in the conference was talking about how

> housing, income etc affected health; to which the minister replied that she

> was here to talk only about health, because that was her brief; other

> departments dealt with those other issues! After that incident, though, she

> became a very good of friend of health visiting: which goes to show that

> you don't need to be obsequious to get respect (soemone should tell

> Spiller).

>

>

>

> Four years ago, we

>

>

> ruthngrant wrote:

>

> > Are Senate members intending to meet at CPHVA conference? It would be

> > good to put faces to names.

> >

> >

> >

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Just to make sure a message on notice board does not get lost, maybe we

should arrange a time and place before hand!!

Charlene

Conference

> >

> >

> > > Are Senate members intending to meet at CPHVA conference? It would be

> > > good to put faces to names.

> > >

> > >

> > >

> > >

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I think it would be great to meet within the party on Friday evening, perhaps

Senate members can identify themselves with a white carnation, flower in hair or

something equally amusing and 'different' although I suspect we will graduate

towards each other anyway, would that work?

Regards, Xena Dion

>>> Toity.Deave@... 10/12/01 12:27pm >>>

Yes, I was mentioning it to at the beginning of the week that we ought ot

meet. Just a matter of when and where!

Toity

On Thu, 11 Oct 2001 19:59:37 +0100

Bidmead <christine@...> wrote:

> Good idea Ruth, perhaps we could all arrange to meet somewhere. Watch the

> messages/notice board at conference. Let's see if we can arrange something.

>

> Conference

>

>

> > Are Senate members intending to meet at CPHVA conference? It would be

> > good to put faces to names.

> >

> >

> >

> >

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I think it would be great to meet within the party on Friday evening, perhaps

Senate members can identify themselves with a white carnation, flower in hair or

something equally amusing and 'different' although I suspect we will graduate

towards each other anyway, would that work?

Regards, Xena Dion

>>> Toity.Deave@... 10/12/01 12:27pm >>>

Yes, I was mentioning it to at the beginning of the week that we ought ot

meet. Just a matter of when and where!

Toity

On Thu, 11 Oct 2001 19:59:37 +0100

Bidmead <christine@...> wrote:

> Good idea Ruth, perhaps we could all arrange to meet somewhere. Watch the

> messages/notice board at conference. Let's see if we can arrange something.

>

> Conference

>

>

> > Are Senate members intending to meet at CPHVA conference? It would be

> > good to put faces to names.

> >

> >

> >

> >

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Cardigans i thibk Xena!!

Margaret

Conference

> >

> >

> > > Are Senate members intending to meet at CPHVA conference? It would be

> > > good to put faces to names.

> > >

> > >

> > >

> > >

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Some of us will not be staying for it - am I the only party pooper???

On Thu, 27 Sep

2001 19:50:07 +0100 ruthngrant <ruthngrant@...> wrote:

> It depends where the bar is!

>

> Xena Dion wrote:

>

> > I think it would be great to meet within the party on Friday evening,

perhaps

> Senate members can identify themselves with a white carnation, flower in hair

or

> something equally amusing and 'different' although I suspect we will graduate

> towards each other anyway, would that work?

> > Regards, Xena Dion

> >

> > >>> Toity.Deave@... 10/12/01 12:27pm >>>

> > Yes, I was mentioning it to at the beginning of the week that we ought

ot

> > meet. Just a matter of when and where!

> >

> > Toity

> >

> > On Thu, 11 Oct 2001 19:59:37 +0100

> > Bidmead <christine@...> wrote:

> >

> > > Good idea Ruth, perhaps we could all arrange to meet somewhere. Watch the

> > > messages/notice board at conference. Let's see if we can arrange

something.

> > >

> > > Conference

> > >

> > >

> > > > Are Senate members intending to meet at CPHVA conference? It would be

> > > > good to put faces to names.

> > > >

> > > >

> > > >

> > > >

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  • 1 month later...

good site as I glanced at it

--- leah leah <okieleah@...> wrote:

>

http://www.mcleanbible.org/ministries/access/flyer-020302-workshops-02.html

>

> hi all,

> above is a link to a two day conference at McLean

> bible church in the dc

> area. the reason i sent the link is because its a

> great affordable

> conference with daycare...

>

> the main reason is they have phenominal speakers and

> touch on topics like

> including children with special needs in sunday

> school, how to teach the

> word to them and modify it, they are also having

> famous speakers there

> too....if anyone wants the information, i can mail

> it to you directly or

> email it, but you must email me privately as i am

> " no mail " status on the

> list serv...i know alot of us have had major issues

> with the our

> congregation's accepting our kids and not scorning

> down their noses at

> us.....this would be forever helpful.... take care

> all, leah

>

>

_________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com/intl.asp

>

>

>

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  • 5 months later...
Guest guest

It is still in my diary nne. Are you able to come?

Charlene is organising it, and I am sure will respond. Is the final

agenda ready for circulation, yet, Charlene? Best wishes

Cowpe M (SoCS) wrote:

>Is the conference going ahead on the 14th June?

>nne

>

>

>

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Guest guest

Yes

Attached is the agenda etc. agenda is not completely final as we will change one workshop to accomadate Maureen if she will facilitate. still awaiting confirmation from facilitators.

Charlene

conference

Is the conference going ahead on the 14th June?nne

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  • 7 months later...
  • 1 month later...

From: Beth, Mom to Wade, 16 (CVID,etc.)

Hey Ursula,

I might be going solo. Art can't go & I'm not sure what Wade's summer

school/work plans will be yet. Is Macey going with you? Did she go last

year? The ribbon thing sounds like a good idea. I'll keep you posted on

whether I'm " flying solo " or not....of course with a 16 year old along, I'm

considered solo anyway! :)

I have an off-topic request:

I just got word that my son-in-law,(who is a Huey pilot in The Marines) who

is currently stationed in Woodbridge,Va. attending a school at Quantico, has

been pulled from school & will be deployed this next week to Ca. & then on

to the middle east somewhere. Please say a prayer for his safety & for peace

& patience for my daughter & 2 grandsons, ages 3 & 2. Thanks!

Hope all the pumpkins & their " tenders " are warm & as well as can be this

weekend.

Love & Hugs to all,

Beth

>From: <uahollem1@...>

>Reply-

> " " < >

>Subject: conference

>Date: Sat, 1 Feb 2003 15:09:11 -0500

>

>Anyone going to the conference solo? We are scheduled to go to Myrtle

>Beach at the end of May and Les can not get off

>work again so soon to be able to go in mid-June. has an academic

>program that winds up that week. So I'm on my

>own. I hope to be able to come up with some type of ribbon or sticker for

>the parents to wear if they want to so

>we can all recognize each other.

>

>Ursula Holleman

>mom to (10 yrs old) and Macey (7 yr. old with CVID, asthma, sinus

>disease, GERD, Diabetes Insipidus, colonic

>inertia)

>http://members.cox.net/maceyh

>

>Immune Deficiency Foundation's 2003 National Conference

>http://www.execinc.com/idf/

>

>Immune Deficiency Foundation - Peer Contact for GA

>http://www.primaryimmune.org

>

>/

>

_________________________________________________________________

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Ursula:

Last year we wore green ribbons to signify . One of the moms (sorry, I

forget who) thoughtfully brought lots of extra for those who couldn't find

any to wear.

I took my mom last year... Jeff stayed home with as I didn't want to

bring her and expose her to so many people, she had never traveled at that

point. Plus I wanted it to be a getaway weekend where I could concentrate on

the event instead of chasing after her. Well, my mom is a heavy smoker with

the beginning stages of emphysema, so suffice it to say she was not the best

companion, she couldn't walk anywhere and I would have liked to have explored

the nearby area more, plus she was barfing up a lung every morning and then

proceeding to light up some more. Sigh.

Anyway, there were plenty of people that went solo. I am not planning to go

this year, but I'm torn because it was really well-done. It was really,

really, really neat to meet so many members of this group though -- that was

the best part about going.

(mom to Kate, born 9/19/02; and , age 4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

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  • 2 years later...
Guest guest

We will try to wear green ribbons also, it is getting so close!

Amy J

Re: CONFERENCE

>Hi Dale, we will have green ribbons as well.

>Wish you were coming, we will miss you but understand about family and

health. Hope you are well.

>, Mom to - CVID, asthma, GERD

> Re: CONFERENCE

>

>

> Dayna Fladhammer wrote:

> > Just a question -

> >

> > was anything ever decided about a ribbon at the confrence?

> >

>

> for the past 2 conferences, we have used green ribbons around our name

> tag. Other groups use other colors. That's what Katy will be wearing.

> Don't know about anyone else.

>

> In His service,

> dale

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

> To unsubscribe

-unsubscribe@groups<mailto:-unsubscribe@groups>.

> To search group archives go to:

/messages<

/messages>

>

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Guest guest

We will try to wear green ribbons also, it is getting so close!

Amy J

Re: CONFERENCE

>Hi Dale, we will have green ribbons as well.

>Wish you were coming, we will miss you but understand about family and

health. Hope you are well.

>, Mom to - CVID, asthma, GERD

> Re: CONFERENCE

>

>

> Dayna Fladhammer wrote:

> > Just a question -

> >

> > was anything ever decided about a ribbon at the confrence?

> >

>

> for the past 2 conferences, we have used green ribbons around our name

> tag. Other groups use other colors. That's what Katy will be wearing.

> Don't know about anyone else.

>

> In His service,

> dale

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

> To unsubscribe

-unsubscribe@groups<mailto:-unsubscribe@groups>.

> To search group archives go to:

/messages<

/messages>

>

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Guest guest

Dayna Fladhammer wrote:

> Just a question -

>

> was anything ever decided about a ribbon at the confrence?

>

for the past 2 conferences, we have used green ribbons around our name

tag. Other groups use other colors. That's what Katy will be wearing.

Don't know about anyone else.

In His service,

dale

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Guest guest

Hi Dale, we will have green ribbons as well.

Wish you were coming, we will miss you but understand about family and health.

Hope you are well.

, Mom to - CVID, asthma, GERD

Re: CONFERENCE

Dayna Fladhammer wrote:

> Just a question -

>

> was anything ever decided about a ribbon at the confrence?

>

for the past 2 conferences, we have used green ribbons around our name

tag. Other groups use other colors. That's what Katy will be wearing.

Don't know about anyone else.

In His service,

dale

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe

-unsubscribe@groups<mailto:-unsubscribe@groups>.

To search group archives go to:

/messages<PedP\

ID/messages>

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Guest guest

Dale,

Did you compile a list of all attending the conference. If so would you

share it with me?? I am scheduled to arrive Wed PM and will fly out on

Sunday. Am coming solo, so would like to hook up with a few

people..Think I may get lonely leaving my family, but so much need some

time to myself.

Re: CONFERENCE

Dayna Fladhammer wrote:

> Just a question -

>

> was anything ever decided about a ribbon at the confrence?

>

for the past 2 conferences, we have used green ribbons around our name

tag. Other groups use other colors. That's what Katy will be wearing.

Don't know about anyone else.

In His service,

dale

This forum is open to parents and caregivers of children diagnosed with

a Primary Immune Deficiency. Opinions or medical advice stated here are

the sole responsibility of the poster and should not be taken as

professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

_____

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  • 3 weeks later...
Guest guest

In a message dated 03/07/2005 00:53:41 GMT Daylight Time, julia.andnick@... writes:

ditto Mandis Brilliant to Lorene for organising the conference and gettingthe people over - we need a Bob Geldorf to organise some national awarenessof how such a devastating problem can be significantly helped - why can't weget the testing and suppliments on the NHS (my father who has to foot thebill wants to know!...if they were diagnosed with Leukaemia they pay 000'sfor treatment)

>>> well, somebody onthe EoH list was just suggesting that Bono (and of course Bob) should know that the vaccine sgoign to africa still have thimersol in. The Austim rates are rising. No good feeding the stavring only to poison them?

Worth a shot, can you imagine a Autsim Aid concert, hooked up all around the world, candles and tapestries - cripes, makes me dizzy :)

Mandi x

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Guest guest

ditto Mandis Brilliant to Lorene for organising the conference and getting

the people over - we need a Bob Geldorf to organise some national awareness

of how such a devastating problem can be significantly helped - why can't we

get the testing and suppliments on the NHS (my father who has to foot the

bill wants to know!...if they were diagnosed with Leukaemia they pay 000's

for treatment)

xxxx

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  • 5 weeks later...
Guest guest

Hi, Kitty,

There were children there from age 6 and up. They had play exposures

for them and made it fun. Games were played tying in ocd and fighting

it. Oh and they gave out candy!

Sandy

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