Re: Interesting Web Page - Sue

[Guest guest]

Dear Sue,

Where is the conference being held this summer? Also, if people can nbot

make it do you know if there will be video or transcripts available?

Hugs,

B.

HEDS, New Jersey, USA

[Guest guest]

Dear Sue,

Where is the conference being held this summer? Also, if people can nbot

make it do you know if there will be video or transcripts available?

Hugs,

B.

HEDS, New Jersey, USA

[Guest guest]

In a message dated 1/22/04 12:24:34 PM Eastern Standard Time,

jmgrimse@... writes:

<< What is the topics covered in the Conference?

>>

Every year toics being offered differ. We will be sending out registration

packets in February/early March. it will have a cover letter with soem of the

topics in there. If you are a member of EDNF you will automatically get a

packet. If not and you would like one, please forward your name and address and

I will see that you get one.

Generally, the Collagen Diagnostics Lab from Seattle, Washington will be in

attendance and doing many workshops, a pediatric rheumatologist will be doing a

workshop for parents, cardiologist will be doing a session on the heart, a

doctor from the Hospital for Special Surgery in new York city will be speaking

on the shoulder and orthopaedics, Buffalo Dept. of Genetics will be doing

sessions for adults as well as a session for children, we have a child and

family

psychologist doing sessions for the children. there will be many professionals

in attendance speaking who also have EDS. A doctor, therapist, genetic

counelor, Alberto Freidmann all doing topics on EDS and/or coping. Some for

children, some for adults, depends on where their specialties are. We are

working

on music therapy for children as well as adults, energy work, hopefully art

therapy at least for the kids, water therapy sessions in the pool, etc. the

list

goes on and on........Keep in mind some of these topics may be cancelled

before the conference, and others added. All the specifics are not worked out

with some individuals, some may cancel at the last minute. I do believe this

year we have a very nice program for the children as well as the adults.

My son keeps saying to me, " I can't wait for the conference! " When we

went in 2002, he met other children with EDS they went to some sessions of

their own and had plenty of playtime as well, and as most individuals with

EDS.....all the kids loved the pool! It was great to see that even kids who

were

fairly handicapped, could get out of their wheelchair and enjoy the pool!

So, I hope this answers your questions. Take care.

Hugs,

Sue Ginley

[Guest guest]

Sue,

What is the topics covered in the Conference?

Jen

> In a message dated 1/22/04 7:50:39 AM Eastern Standard Time,

> powerplug@c... writes:

>

> << Where is the conference being held this summer? Also, if people

can nbot

> make it do you know if there will be video or transcripts

available?

> >>

>

> Hi ,

>

> The conference is being held in Buffalo, NY on July 14th-July

18th. We are

> working on seeing if we can get a college communications

department to

> volunteer time for this, but this would be a huge undertaking with

the need for

> videos recording being done five at once. The EDNF does offer

audio tapes every

> year and they can be ordered through the EDNF site, or by calling

the national

> office.

>

> Hope this helps. Take care.

>

> Hugs,

> Sue

[Guest guest]

Sue,

What is the topics covered in the Conference?

Jen

> In a message dated 1/22/04 7:50:39 AM Eastern Standard Time,

> powerplug@c... writes:

>

> << Where is the conference being held this summer? Also, if people

can nbot

> make it do you know if there will be video or transcripts

available?

> >>

>

> Hi ,

>

> The conference is being held in Buffalo, NY on July 14th-July

18th. We are

> working on seeing if we can get a college communications

department to

> volunteer time for this, but this would be a huge undertaking with

the need for

> videos recording being done five at once. The EDNF does offer

audio tapes every

> year and they can be ordered through the EDNF site, or by calling

the national

> office.

>

> Hope this helps. Take care.

>

> Hugs,

> Sue