Re: Those of you going to the convention

[Guest guest]

In a message dated 3/16/04 10:01:39 AM Eastern Standard Time,

monica-jb@... writes:

<< I don't know how conventions work. I've never been to one. I would guess

you all file into an auditorium and listen to some dr speak. >>

No, not really.........there is a few sessions which is a general

assembly....but most is workshops, where you choose the topics you are

interested in and

go....there is five to six concurrent workshops running at a time this year.

Topics range form general genetics to Tai Chi and Reikki. Lots of genetic

topics with Dr. Byers, Pepin, dr. Schwarze, and Dr. . Dr.

Clair Francomano from the NIH speaking about EDS and Pain. There will be a doc

from the Hospital for Special Surgery (Ortho only hospital) in New York City

speaking on ortho issues and the shoulder. Many general EDS topics, water

therapy, you name it its happening. Not to mention the most important thing

about the conference as far as I am concerned. Seeing all my FRIENDS!!!!!!

, I know you feel bad because you have heard there is not research

going on specifically for hypermobile EDS, but this is just not true. Many of

the

skin biopsy samples that turn up negative for VEDS are kept by the lab in

Seattle where further research is done. There is a new type going to be

revealed

at the conference which is a Hypermobile type with Valvular issues. So,

there is research going on. Dr. Francomano's study is about EDS and

pain.....this

is for those with lots of hypermobility issues, I would imagine. And I need

to mention that your familial type of EDS, whether it is hypermobile or not

has a lot of issues shared with vascular. It may be that through vascular

research they will find the key for hypermobile testing. I for one feel

strongly

about this since in my family we were first diagnosed as having hypermobile

EDS. There are members in my family who are very hypermobile, who test negative

for VEDS. I feel there must be a gene that can be transmitted exclusive of

the vascular gene. Now, to get someone to study my family.........

I hope this helps you to understand a little better the conference is not

just for vascular issues. Are you a member of EDNF so you will get the

conference Registration info? If not and would like to see it or receive it in

the

mail let me know and I will be sure you get it. Take care.

Hugs,

Sue

[Guest guest]

In a message dated 3/17/04 10:17:01 AM Eastern Standard Time,

monica-jb@... writes:

<< he said that they would love to study my family for research. That's

great. >>

That is great! they may do the skin biopsy then.....this is how they study a

lot of stuff there.......go for it!!!!! We would love to do this too in our

family, but the problem is we are a huge family and getting everyone to

participate would be difficult. Also, we are on the other side of the US, not

near

Seattle.

Hugs,

Sue

[Guest guest]

In a message dated 3/17/04 10:17:01 AM Eastern Standard Time,

monica-jb@... writes:

<< he said that they would love to study my family for research. That's

great. >>

That is great! they may do the skin biopsy then.....this is how they study a

lot of stuff there.......go for it!!!!! We would love to do this too in our

family, but the problem is we are a huge family and getting everyone to

participate would be difficult. Also, we are on the other side of the US, not

near

Seattle.

Hugs,

Sue

[Guest guest]

In a message dated 3/17/04 10:17:01 AM Eastern Standard Time,

monica-jb@... writes:

<< he said that they would love to study my family for research. That's

great. >>

That is great! they may do the skin biopsy then.....this is how they study a

lot of stuff there.......go for it!!!!! We would love to do this too in our

family, but the problem is we are a huge family and getting everyone to

participate would be difficult. Also, we are on the other side of the US, not

near

Seattle.

Hugs,

Sue

[Guest guest]

In a message dated 3/17/04 10:27:47 AM Eastern Standard Time,

pghand@... writes:

<< .I am just 2 hours north

of it for anyone who wants to visit! lol

>>

Yeehaa!!!!! We are trying to plan a trip over the border to the

Falls.......we'll have to see about working that into the post conference plan!

Hugs,

Sue

[Guest guest]

Thanks.

I guess I'm jsut back to feeling sorry for myself, and my kids.

Dr Byers did say the research as to why some hypermobile people have pain, and

some don't, has slowed pretty much to a stop.

In his letter back to me, he said that they would love to study my family for

research. That's great. I'd do it in a second. I hope that that research

starts up soon.

And, since we are so close to the University of Washington, It would work great.

[Guest guest]

Thanks.

I guess I'm jsut back to feeling sorry for myself, and my kids.

Dr Byers did say the research as to why some hypermobile people have pain, and

some don't, has slowed pretty much to a stop.

In his letter back to me, he said that they would love to study my family for

research. That's great. I'd do it in a second. I hope that that research

starts up soon.

And, since we are so close to the University of Washington, It would work great.

[Guest guest]

For those of you going to the convention.....I am just 2 hours north

of it for anyone who wants to visit! lol

Jill

[Guest guest]

For those of you going to the convention.....I am just 2 hours north

of it for anyone who wants to visit! lol

Jill

[Guest guest]

For those of you going to the convention.....I am just 2 hours north

of it for anyone who wants to visit! lol

Jill

[Guest guest]

Yea, If and when they call, we will do it.

[Guest guest]

Yea, If and when they call, we will do it.

[Guest guest]

Waahhhh, we want YOU to come to US!!!! Could you???

Love Lana

[Guest guest]

Hey, I'll do that, Sue! I do so want to meet Jill!

Love Lana

[Guest guest]

And I so want to meet you!!!

Jill

RE: Re: Those of you going to the convention

Hey, I'll do that, Sue! I do so want to meet Jill!

Love Lana