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Actually, I think it depends on what kind of donations they receive. It

costs a lot to produce this, so they have asked for donations. If I hear

more, I'll pass it on. I'm considering taking a tape recorder, but that

will only catch the seminars I go to, and I'm not sure how well it would

work?

Love Lana 0 :-)

conference

Hi

Just wanted to ask if there will be a tape or written material that will be

available to those who can't make it to Buffalo.

Thanks

Betty

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  • 4 weeks later...
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There are ways I hate this time of year, because I hear about all these

possibly great fixes available, and invariably some get my hopes up,

unnecessarily.

First, I have to remember that doctors are going to put things as positively

as possible at a conference. They're defending their livelihood, after all,

and on top of that, want to give us hope.

Second, I have to remember that EDS, while an inherited, family syndrome, is

incredible individual. Just because it works for one, or even most, it doesn't

mean it's a guaranteed fix. And most of these techniques have been assessed

and rejected for me -- although that's no reason to reject them out-of-hand,

either.

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Wow, thank you for all your support, encouragement and advice on my

being able to get to the conference next year - I am simply blown

away by that! I promise to talk with you all more once I am a little

less swamped with hospital stuff and stays etc, and once again thank

you all deeply for your incredible kindness. I promise I will do

everything in my power to get over and thank you all in person at

next years conference!

Love and hugs....Jo

xxx

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Dear lee & Sara,

You will be missed in Chicago.

Reggie

To: Sent: Tuesday, March 24, 2009 12:12:01 AMSubject: conference

Because of the cost and not feeling the best in the world Sara and Lee Grilley will not be able attend the conference this year.We hope to be able to attend next year.My doctors have told me that I will be looking for a tx in the next 6 months to a year.Doctors are suprised that I have progressed this far in this short of time.Lee G of Seattle

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Dear Lee,

Thinking back to our 1st PSC golf outing, it is hard to believe you are so close to transplant. You and your wife will be missed at this years conference. Please keep us updated on your progress. 

All the best,

Tarheel Tim

Job Hunting? Start with the companies that posted job openings this week.

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Dear Lee,

Thinking back to our 1st PSC golf outing, it is hard to believe you are so close to transplant. You and your wife will be missed at this years conference. Please keep us updated on your progress. 

All the best,

Tarheel Tim

Job Hunting? Start with the companies that posted job openings this week.

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Dear Lee,

Thinking back to our 1st PSC golf outing, it is hard to believe you are so close to transplant. You and your wife will be missed at this years conference. Please keep us updated on your progress. 

All the best,

Tarheel Tim

Job Hunting? Start with the companies that posted job openings this week.

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Lee -

You will be missed. Hope you feel better or can move quickly and as easily as possible to transplant. Take care of yourself.

Joanne H

(, Ca)

..

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