Refocus! Reframe! Reminders!

[Guest guest]

Amen

[Guest guest]

Dear ers,

1) was set up to create a place where people with CMT could share

their experiences, try to stay positive, and to share any research we

come across.

2) We have rules. If you are unclear about this, read the main web page

OR re-read your welcome letter. Among these rules is the use of good

manners. It is unfortunate when these rules are ignored. I will offer no

explanation for my recent actions regarding rules violations. If you

are unclear about what 'good manners' are, there are books, classes, and

a wealth of information on both good manners and Netiquette.

3) You do not need to agree or disagree with me on my actions with this

list and everything else.

4) This list is not for your 'opinions'. Those of us who have been here

for years, realize 'opinions' cause clashes, flames and ill will. So,

again, if you have an 'opinion' take it to another place. Perhaps you

will want to start your own CMTOpinions group!

5) We are simply weathering a storm. Lists have a life of their own;

sometimes many posts, sometimes none. I encourage you to get in the boat

while we ride the waves! However, if you are having difficulty with the

'confusion' lately, I would encourage you to find a list, support group

or organization that better meets your needs.

6) It has been proven that positive experiences shared AND learned from

others create a better sense of health as well as gives encouragement

and an uplift. That was and still is the main premise.

7) This list was not set up as a 'chat', but for CMT sharing via email

and how you live a more positive life, making changes, getting help, and

trying new therapies, etc. Honest questions about how others live with

their CMT are welcomed. Research is posted as soon as we recieve it. We

DO have a 'chat' feature, and we have had one wonderful scheduled chat.

I am sorry that our 'chat' is not set for Mac Users - that is a

problem and out of my hands.

8) Until further notice this list is now restricted; meaning each post

is moderated and new members must be approved. We are also doing some

work on the site to improve outdated material; this means at certain

times, some areas might be inaccessible. Please be patient.

9) If you don't like this leave now and find what is best for you.

Unfortunately, there are several impostors in this group who have done

some damage. However, I am not worried! There is much good at to

come, including a brand new web site, more information, etc. I have been

hard at work on this with several others who believe in the role of

and in for CMT Awareness. If you believe in the future of

, stay here, participate in dicussions and watch where we go next!

10) May I ask that those of you who have 'threatened' to leave just do

so?

11) I am not interested in how many people are in our group. I am

interested in providing quality information to CMT diagnosed people and

our stated mission while we walk with each other in our daily struggles

and learn to clearly see we can be positive. I am also interested in

connecting CMT persons from around the globe to learn even more about

treatment and research. And I am especially interested in continued

work with the for CMT Awareness Campaign and all that will come

from that.

12) I have purposely not responded to personal posts sent to me. And I

will not - on this 'issue'. This is my boundary. However, I will, with

those of you who choose to remain here and walk with me, continue to

share my CMT life and be of the very best service.

13) Many of you already realize you get out of a group what you put into

it. I thank all of you who have worked so hard along with me in

different ways to continue carrying our message.

14) I have asked repeatedly to cut and paste the post that you are

replying to. Please be courteous and do so.

15) I have asked repeatedly that no 'forwards' be sent to the

group. If you continue to do so, they will be automatically discarded.

16) Please do not send virus warnings or other non-CMT related material.

These will be discarded. .com is set to catch viruses, so do not

worry.

17) Please review this message: consider your needs, wants, dreams and

desires, and question if is right for you. Then, IF is right

for you, let's roll!

Sincerely,

~Gretchen/Moderator