[MelodyL]

Okay, I finally edited the 90 second video of the PN Support Group in NYC.

We meet on the 3rd Thursday of the month, every month. I just wanted all of you to see what the room looked like and the nice friendly people (who ALL by the way suffer from various forms of PN).

So if any of you live in NYC or nearby, and think you'd like to get out once a month and have coffee and cake, and meet other people with the same affliction (many different causes, by the way), well, just send me a private message and I'll put your email on our mailing list.

Here's the video.

http://www.youtube.com/watch?v=gK_hVs6ldaE

Melody

[mrsD]

Very nice! You certainly have a gift with the video and your new camera rocks!

Thanks for posting it!

[Kitt]

It looks just like a CMT support group meeting After going for many years you can tell how people with CMT have progressed including myself. Sometimes that can be a downer to see CMT progressing as it does; at least for people with CMT.

Thanks for putting the PN support group meeting on. I am sure it will help others.

[MelodyL]

Originally Posted by mrsD

Very nice! You certainly have a gift with the video and your new camera rocks!

Thanks for posting it!

I have to tell you something funny that Mike said at the meeting. He was the tall man in the beginning of the video (on the left).

We were all sitting down and speaking about our various experience with PN, and he said:

"You know, something odd is happening when I see another disabled person, when I am walking in the street and I see a man on crutches, my legs start to hurt, when I see a man who has an injury to his arm, well, my arm starts to hurt.

I blurted out "Well, don't go near anyone in labor".

We laughed our heads off.

Mel

[Kitt]

That is a good one Thanks for that

[Sheltiemom18]

Well done, Melody! That was a very nice piece of video work.

Would you mind telling us how the group's first meeting was advertised? Am thinking of starting a support group in my Ohio home city for Sjogren's Syndrome people who also have neuropathy as a complication - catching two birds at once, so to speak.

Sheltiemom

[MelodyL]

Originally Posted by Sheltiemom

Well done, Melody! That was a very nice piece of video work.

Would you mind telling us how the group's first meeting was advertised? Am thinking of starting a support group in my Ohio home city for Sjogren's Syndrome people who also have neuropathy as a complication - catching two birds at once, so to speak.

Sheltiemom

Hi there.
I really have no idea. The first meeting Alan and I went to was 10 years ago and it was at the Lighthouse in NYC. I was a HUGE meeting with hundreds of people.

For the past few years, it has been at the CBS building in NYC.

I gather if you go to the Neuropathy Association's website, and search Support Groups, maybe they will have a link "Start your Own"

Or maybe the Sjogren Organization has a website that you could go and find out about starting your own support group. It's a nice idea that you have.

Best of Luck

Mel

Melody

[Kitt]

Here is a site for a list of the states where there are support groups for Sjogren's Syndrome Support Groups in the U.S.

http://www.sjogrens.org/home/get-con...support-groups

[Sheltiemom18]

Melody and Kitt, for your support group start-up suggestions. Will get on them ASAP.

Sheltiemom

[MelodyL]

Originally Posted by Sheltiemom

Melody and Kitt, for your support group start-up suggestions. Will get on them ASAP.

Sheltiemom

I LOVE these little smiley faces things.

lol
Melody