i think teleconferencing or even online video conferencing for people
with microphones/cams would be a great idea.

--- In dysferlin@yahoogroups.com, "Thayer, Joshua" <jthayer@...> wrote:
>
> 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 <http://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
> <http://www.geocities.com/bluedestin/SupportGroup.pdf>
>
>
>
>
>
>
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