Lee Spurgeon
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Dear Friends:
Today we are having our local support group meeting in Oregon City. Our support group is run by John Schilke, who is the Western States Regional Director of the GBSFI. I would like to invite you to submit questions to the GBSFI which I will ask on your behalf. I would answer your questions on this thread. If you post your question later than 12:30 Pacific time, I will ask your question at the next meeting which will be in about six weeks.
Lee
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SCOTT J SIELEMAN
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[SIZE="5"][/SIZE]
HI GLAD YOUR HEAR TO ANSWER QUESTIONS !
2 QUESTIONS
1} IS THERE GOING TO BE A CHATROOM IN HERE ON THIS SITE AND CAN I HELP IN ANY WAY?!
2}what do i have tooo to be an official laision here in my part of the country,,i have done as much as i can ,,,but never get official word!?:( :confused:
thanks scott[survivor48]
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Lee Spurgeon
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Dear Scott:
I learned that the web site was due for an overhaul soon anyway when it got hacked. One reason was the old web site wasn’t as secure. Other than that, Dr. Shilke didn’t know the chatroom wasn’t up and running. Sorry, no help there.
As far as becoming a liason, you ask to become one and there is a phone interview with the Regional Director of your area. The interview is to ensure that you don’t have an ax to grind and that you have the temperment to do the job. Regional Directors are volunteers and the demands on them are pretty time consuming, so it often takes a bit of time for them to get back to you. Give it some time and if you don’t hear something back, give another call or an e-mail to the foundation.
Sorry I couldn’t get better answers but thanks for asking the questions. It made me feel useful.
Lee
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Jerimy
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Scott,
I believe Kassandra might be the regional director for your area, PM her, if she isn’t she can point you in the right direction.
Jerimy
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Scott:
In response to your question about becoming a liaison, the Foundation has a routinized way to select liaisons that will bring positive and informative messages to patients. We help train the liaisons and take an active role in developing a cadre of reliable people.
If you feel you would like to be considered, call the headquarter office at 610-667-0131 and ask to speak to Estelle.
Barbara
Assoc. Director
GBS/CIDP Foundation International
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Pam
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[QUOTE=bkatzman]The Foundation has a routinized way to select liaisons that will bring positive and informative messages to patients. We help train the liaisons and take an active role in developing a care of reliable people.[/QUOTE]
Why is this routine so different from the Canadian Foundation? :confused: I have offered to volunteer and to be a liaison to no avail… and before I had my own website.
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sonny
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[QUOTE=Lee Spurgeon]Dear Friends:
Today we are having our local support group meeting in Oregon City. Our support group is run by John Schilke, who is the Western States Regional Director of the GBSFI. I would like to invite you to submit questions to the GBSFI which I will ask on your behalf. I would answer your questions on this thread. If you post your question later than 12:30 Pacific time, I will ask your question at the next meeting which will be in about six weeks.
Lee[/QUOTE]
Hi Mr Lee. I have 2 question that always want to ask. why recovery is so different on any of us who have GBS? 2. Does everybody who have GBS have a full recovery and feel good as they were before?
sonny diagnosed GBS 2004.
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gene
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sonny,
just in case lee doesn’t see this right away;
1 – it depends so much on what nerves were attacked & the extent of that damage.
2 – those who recover that much, and they are out there, are not on this forum.
take care. be well.
gene gbs 8-99
in numbers there is strength
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Roxie
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You are still here….. I still can bet you on a dime. Hope you are recovering still.Mss auntie Myrt. take care. Roxie xoxoxoxoxoxo ME
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LindaH
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Just curious since I am new here and don’t have GBS but is there also foundations just for CIDP patients also or is it just one foundation covering both? Pretty stupid question huh? LOL! I took a pill for this nerve damage stuff and it has put me in lala land! Doofy Linda at your service! 
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junec65@aol.com
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Is it safe to get a shingles shot after having GBS?
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Expert diagnosis & management of inflammatory neuropathies is critical to our patients. This is what our medical advisory board members had in mind when setting up the new Centers of Excellence program. A year later, we continue to add healthcare facilities providing exactly that.
