Nicole.
I am confused.  YOU can start a support group anywhere you want.  No one
has to have permission as far as I know.  I go to different internet
support groups all the time, so if you want to make a site or have one
yourself, who will stop you?
If you are still not sure, call the chapter and voice your concerns about
what you feel. They may help you.

I went to a few meetings and they were pretty good here. Before that,
others had told me they all are a bunch of whiners.  I didn't see any of
that.  Our chapter always tries to give a topic beforehand, then if no one
wants to talk about that, they just say "well how is everyone doing" Of
such and such, what do you think?

This group you are talking about, where is it?   Would you consider coming
to an online support group monthly. our chapter has one the last monday
night of the month, and are thinking of making it open chat. We usually
have a topic then go from there on line.  OR you tell what you want.  Kinda
like the face to face one above.

If you like to come, email me privately.  I will give you the link.  I have
posted it here but no one showed so that is fine.  It is EST zone at
7pm.....

You definately do not need to feel like you do.  Please call them and tell
them.  YOU also do not need to join a chapter. JUst join lupus foundation
at least then you get the magazine lupus now, as well as any newsletters of
new things.  Want to join OHIO's. I will give you info.  Where ya at?

email me
janers

there's no reason you can't - as long as you don't *say* you are affiliated
with the LFA or any other organization that hasn't given you tacit approval,
you can set up whatever you like.

I'd like to recommend you contact the nearest hospital if there is one
nearby.  When the LFA killed our group without notifying myself or the other
co-facilitator, the hospital chaplain said they would be happy to continue
to provide the room free of charge once a month if we still wanted to meet.
So i think it's worthwhile to ask what sort of support such an institution
would provide to you for a "private" support group.  At most, they may ask
for a small donation.  At this point, I personally would rather pay a small
donation than give to the local LFA chapter.  it's been a real tough thing
for me lately because for so long I upheld the LFA as such a great resource.

There are also other lupus organizations in the US (or at least one - can't
remember the one set up by one of those boy-band singers) who might be
willing to help as well.

you would be best off finding someone who would facilitate for you.  Ours
was the hospital chaplain but if you can't find someone like that yourself,
ask the chaplain if they know of a resource for such folks.  I'm sure they
are out there as there is a group in Houston that specializes solely in
training facilitators for any number of health problems.  I'm sure if I
asked, they'd do their best to set me up with someone - unlike the LFA who
had no desire to help despite our repeated requests.

things we did that we hoped would help our group - got guest speakers who
were willing to commit one night of their lives to the group. I got a
neurologist who specialized in neuromuscular disease and the co-fac got a
woman who taught Tai Chi.

you

Hi Nicole,
I tried to do it through the LFA and in affiliation with them years
ago, but after A YEAR they were totally unresponsive.  I know that a
lot has changed there since then, but here's what they told me.
There's some sort of training thing you can go to (they only do it a
couple times a year) and it's in affiliation (I think) with the
Arthritis Foundation.  Anyhow, once you do that you can get affiliated
with them as a group. I asked them time and time again to help me out
because I was interested in getting a group together for younger women
with SLE...no luck.  But I was able to start a group anyway...if you
want to talk about it, I can tell you about all the hoops and rules to
think about...email me.

best,
julia