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Re: 2004 EDNF Conference-

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I started last night checking into possible flights from Richmond. They are

not near as cheap as I was hoping for plus there are not any direct flights!

Icouldn't believe it.. actually I could . Richmond, Va. is one of the most

expensive cities in US to fly out of and the routes stink!! Sorry for my

language,

ma!

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In a message dated 2/1/04 2:11:15 PM Eastern Standard Time,

teaforme@... writes:

<< Are your boys affected by EDS? >>

Hi ,

One is diagnosed with hypermobility syndrome as he is hypermobile but

negative for the vascular gene (-10).

And the other (- 7) is diagnosed with VEDS. I'll have to ask them if

they would like this. Right now writes snail mail with Sedgley and

he

really enjoys talking and meeting others with EDS. In fact he just won't

shut up about the conference. He thinks he is going to see all the friends he

made last time, and I have no idea how to tell him some may not be there. I

suspect he will most definately want to have an email penpal. I am not sure

abut

, but i will ask him.

What are your concerns with the latex allergy? Is there something we can do

to help you with this? I have latex allergy too, but suspect it may not be as

severe as your son/sons. Although, I take an allergy pill daily to head off

any problems and that may be why I don't seem to have too much trouble. Are

you concerned with food prep? Something in the hotel?

Well, let me know if there is anything and I'll let you know abut emailing

with the boys after I talk with them. Take care.

Hugs,

Sue

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In a message dated 2/1/04 2:11:15 PM Eastern Standard Time,

teaforme@... writes:

<< Are your boys affected by EDS? >>

Hi ,

One is diagnosed with hypermobility syndrome as he is hypermobile but

negative for the vascular gene (-10).

And the other (- 7) is diagnosed with VEDS. I'll have to ask them if

they would like this. Right now writes snail mail with Sedgley and

he

really enjoys talking and meeting others with EDS. In fact he just won't

shut up about the conference. He thinks he is going to see all the friends he

made last time, and I have no idea how to tell him some may not be there. I

suspect he will most definately want to have an email penpal. I am not sure

abut

, but i will ask him.

What are your concerns with the latex allergy? Is there something we can do

to help you with this? I have latex allergy too, but suspect it may not be as

severe as your son/sons. Although, I take an allergy pill daily to head off

any problems and that may be why I don't seem to have too much trouble. Are

you concerned with food prep? Something in the hotel?

Well, let me know if there is anything and I'll let you know abut emailing

with the boys after I talk with them. Take care.

Hugs,

Sue

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Share on other sites

In a message dated 2/1/04 2:11:15 PM Eastern Standard Time,

teaforme@... writes:

<< Are your boys affected by EDS? >>

Hi ,

One is diagnosed with hypermobility syndrome as he is hypermobile but

negative for the vascular gene (-10).

And the other (- 7) is diagnosed with VEDS. I'll have to ask them if

they would like this. Right now writes snail mail with Sedgley and

he

really enjoys talking and meeting others with EDS. In fact he just won't

shut up about the conference. He thinks he is going to see all the friends he

made last time, and I have no idea how to tell him some may not be there. I

suspect he will most definately want to have an email penpal. I am not sure

abut

, but i will ask him.

What are your concerns with the latex allergy? Is there something we can do

to help you with this? I have latex allergy too, but suspect it may not be as

severe as your son/sons. Although, I take an allergy pill daily to head off

any problems and that may be why I don't seem to have too much trouble. Are

you concerned with food prep? Something in the hotel?

Well, let me know if there is anything and I'll let you know abut emailing

with the boys after I talk with them. Take care.

Hugs,

Sue

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