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New Support Group Available   Message List  
Reply | Forward Message #366 of 592 |
RE: [dysferlin] New Support Group Available

John,
 
I think this is a great initiative.  I have thought about doing something similar in Boston, and I spoke with the MDA representative, but all she said was that there is no such group and she doesn't know any other Miyoshi or LGMDIIB patients out here, so I hit some what of a dead end.  She did introduce my wife and me to a man with Friedreich's Ataxia and his wife, and we've built a friendship and have found it to be very helpful with respect to general disability issues, but I can imagine a more specific support group would be great.
 
So, why all this rambling background?  Well, I was wondering if it wouldt make sense to set up a call in number for your meetings.  Perhaps not this one, but for future ones. Or, so as not to impose on your local group, we could maybe just set up a monthly call in teleconference for interested people.  I suppose there is some risk of it getting to big, but I doubt it given the number of us - especially if it is scheduled regularly.
 
What do you (and others) think of that?
 
Regards,
 
Josh

Joshua M. Thayer
Edwards Angell Palmer & Dodge LLP
111 Huntington Avenue at Prudential Center
Boston, Massachusetts 02199-7613 
Direct: 617 239-0518; Fax: 617 227-4420
www.eapdlaw.com

 

From: dysferlin@yahoogroups.com [mailto:dysferlin@yahoogroups.com] On Behalf Of John
Sent: Tuesday, August 19, 2008 2:05 AM
To: dysferlin@yahoogroups.com
Subject: [dysferlin] New Support Group Available

This is a pdf file I created for the support group. What do you think?

http://www.geocities.com/bluedestin/SupportGroup.pdf

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Disclosure Under U.S. IRS Circular 230: Edwards Angell Palmer & Dodge LLP informs you that any tax advice contained in this communication, including any attachments, was not intended or written to be used, and cannot be used, for the purpose of avoiding federal tax related penalties or promoting, marketing or recommending to another party any transaction or matter addressed herein.

 
Wed Aug 20, 2008 2:55 pm

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joshtc3
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Forward 		Message #366 of 592 |
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This is a pdf file I created for the support group. What do you think? http://www.geocities.com/bluedestin/SupportGroup.pdf... 		John
bluedestin
Offline Send Email 		Aug 19, 2008
6:05 am

John, I think this is a great initiative. I have thought about doing something similar in Boston, and I spoke with the MDA representative, but all she said...
Thayer, Joshua
joshtc3
Offline Send Email 		Aug 20, 2008
2:55 pm

i think teleconferencing or even online video conferencing for people with microphones/cams would be a great idea. ... Providence RI, Stamford CT, Washington...
xron922
Offline Send Email 		Aug 20, 2008
6:46 pm

If you are interested in teleconferencing there is a place where you can get free access to a conference call line so that everyone can call into one place and...
lrufibach
Offline Send Email 		Aug 20, 2008
7:39 pm

Thanks Laura. That's a great suggestion! Joshua M. Thayer Edwards Angell Palmer & Dodge LLP 111 Huntington Avenue at Prudential Center Boston, Massachusetts...
Thayer, Joshua
joshtc3
Offline Send Email 		Aug 21, 2008
12:25 am
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