Re: New Peripheral Neuropathy Support Group - Tallahassee, FL

[Guest guest]

Hi,

I started a chronic pain support group years ago .... One of our best sources

for new members were the local doctors. Once the doctors trusted what we were

doing, they sent us lots of their patients. We contacted the doctors via

mail. Also, we asked the editor of the local paper if he would do articles on

the group, which he did. He assigned a reporter to the story, and we had a

full page in the community section of the paper, with pictures of the members

and everything. We would send the articles to the local doctors and that

would lend credibility to the group. Good luck with your group.

[Guest guest]

Hello the Mitchel House,

The following is not meant to discourage you, only to show some of

the pit falls.

We have a CMT or we had a CMT support group, I'm not so sure where it

is at this point in time. Anyhow, one of the problems I found we had was

keeping everyone's interest. and it soon begin to effect attendance.

Presentations by doctors like neurologists, geneticist, orthopedic, physical

therapist, occupational therapist, nutritionist, someone from Soc.Sec. (on

disability Insurance) , etc., would keep everyone's interest. We had people

coming from all over the state and some out of state, so you have to have a

good program to give them a reason for coming. We started out with around

25-30. The last meeting I went to there was only 4. We tried collecting dues

to cover materials used, coffee and cookies for a night and maybe a social

gathering some where along the line, but the attendance dropped even more.

There is only so much talking of personal problems before people start to get

bored. It seems that support groups start out like a house a fire then

dissipate over a period of time, but I believe that's par for the course. I

hope you have great success with yours.

E

[Guest guest]

E ...

Thanks for the input ... I can only tell people that " My Feet Hurt " so many

times ... so I like to introduce other related topics or rebut ideas contrary

to my own. I think a lively debate, as long as personal attacks are left out

of it are healthy to a support group. Of course, the debatable topics should

be related to the group.

[Guest guest]

Hi, I am a co-leader of a CMT support group in the state of Oregon. Our

support group has been going for 4 years. They started out with 4 people and

we can have up to 40 with special speakers. Our mailing list with internet

also is 70. Our last meeting we had 13 people. The meeting before was 15 with

a special speaker on RX's. Guess what. The meeting before that was only

6...... But that's o.k., those 6 (including myself, benifited from the

gathering.

At one point we got very discouraged because of the low attendance and almost

disbanned the support group. We are very thankful we did not. Instead we

made a change.

We have our meetings evry 3rd Saturday of the month. EXCEPT: June (Father's

day week-end) and December due to the hectic schedules. From 10:30am to noon.

We now have 2 locations for our meetings. 40 miles apart. One month is in the

City of Portland, the next in the town of . This allows more people

from other areas to attend. Some of us attend both locations all the time.

Others only attend the one in thier area. That's o.k....

We try to have a special speaker 3 to 4 times a year, (more if we can find

someone). The rest of the time we gather and converse as a group... I would

imagine this would be more difficult in a bigger group. Too many people

wanting or needing to talk and not having the time. In our group there isn't

any poor me stuff in our meetings. So our conversing is not depressing. In a

small group we usually get everything covered. My mom (the other leader) and

I are always prepared with information we've found usually on the internet,

in case no one has something they need assistance with.

If the place you meet allows beverage and snacks it is a good idea to serve

something...

We have a yearly dues of $5 to help cover mailing of newsletters, those that

cannot afford do not have to pay... Usually everyone pays.

When we have a special speaker we sit a basket on the table for members to

put donation's into for our speaker to cover thier expense to join us. Some

speakers accept it and others won't.

I will send you a copy of our Newsletter we put out in your private e-mail.

Jeanie