[Thelma]

What could you put into the paper that is not covered on the site? I guess I just don't see what could be included in it.

With the speed of today any research info etc would not be up to date.

[Chemar]

Hi Thelma

the vast majority of members never leave their home forum and to many it is quite a surprise to venture out and find all the other forums....some like it and participate on many, others prefer their home forum, and that is good too.

However a newsletter reaches all members, even those who havent been here in a while, and would have a whole different format and appeal than being on the forums

The initial newsletter would go out to all registered members, with the option to unsubscribe at any point. Wouldnt want to spam anyone now

anyway, again, this is just an idea that has been considered a few times and this time we just want to get member feedback on it to make sure this is worth pursuing.

thanks for all feedback so far!

[Thelma]

Hey Chemar [How are you]
So then it is to be like a family paper. That is news from all of the sites here. I still don't get the reasoning for it. If a person here wants to remain in their own forum then it is their choice as it is so easy to get around here. There are some forums that would not be friendly to others coming in and just talking. Those that have troubles typing or indeed have cognitant problems but don't want to advertise the fact all over the forums.

I for one think it would be better to just accapt this site as it is and realize that it is for neurological diseases and conditions related to same.

The members will not feel too good if they are included against their will in any newsletter going out.

Perhaps that is my problem, the fact that it is being referred to as a newsletter when i think you are referrring to a sort of floating get together of sorts.

Don't know how to word this exactly.

Each and every individual forum here is a family of sorts and could you not think of it as an extended family. Rarely do most members interact and that is fine.

This is not a site to me for what you all are thinking. We are brought here because of seeking information on diseases and if we find friends here well that is good if not it still has done it's job.

What exactly is this site in everyones mind then. Is it to be a social club for chit chat or a serious entity in the world of neurological help.

Better decide soon.

[Doody]

Did somebody already ask if this is a newsletter that would be received by email?

I think it's a neat idea, and it's a lot of work! I've done several newsletters in my work life and it can be fun.

If members didn't want to receive it, they could request not to be on a mailing list, right?

[Chemar]

no Thelma...not for chit chat or frivolous stuff tho yes, we certainly would like to do features on member's talents etc

It would be a Neurologically Relevant Newsletter.

Doc already does one for PsychCentral which is primarily an update on recent news and research related to the topics there

Here the idea is to have that and a bit more.

It would for example feature any member stories who WANT them told, while also reporting on research and news related to Neurology in general, and specific conditions that may be in the news, or that members of that forum would like to get out to a broader readership.

It could also carry relelvant information on important news re medications or SSI/Worker's Comp.....or ideas for coping with neurological illness or a whole host of things that many members may appreciate.

And it certainly wouldnt in anyway result in a flood of members visiting each other's home boards any more than they do now, rather it would just provide a means to share more info to a broader membership than read CFF

the Newsletter concept here was first suggested months ago...last year in fact.
and it actually isnt my idea....I am just the one who has volunteered to see if the membership has any interest in this and then try to get an editorial team together and try one edition.

If the feedback here indicates a clearly not interested, or if a first edition doesnt really work, or, if many members join you in requesting not to be sent a quarterly Community Newsletter , then we would just drop it and move on with no disruption to the normal life of this community.

Again, this is something that was suggested and we are only discussing its viability or relevance or desirability.

[Chemar]

howdy Doody

yes, it would be emailed like the PC one is and members could choose whether to opt in or out to receive it

[Lara]

Howdy Doody. lol I love that. I remember that saying from a tv show from the US that I can't remember the name of at present. Where is my brain?

Thelma,
sometimes you confound the socks off me.

Bear with me please as I'm a little frustrated this morning after attempting to post something that I feel is important on another site which in the end took me about 40 frustrating minutes or more from go to woe...

"Is it to be a social club for chit chat or a serious entity in the world of neurological help."

Why on earth would you think that a newsletter is akin to a social club or that the newsletter would not be handled in a discreet and proper manner to begin with?

What if it was a type of social gathering or a floating get together anyway? Who would that actually harm or hurt?

"i think you are referrring to a sort of floating get together of sorts"

What on earth is so wrong with people finding companionship with others anyway? You obviously don't like doing it but other people might have different needs. I'm far from the social butterfly, but I don't mind if other people find a bit of relief in chatting or humourous pursuits.

Obviously what this site is in my eyes is different from what it is in your eyes 'cause that's what you keep telling me. I've no idea really, because I'm not sure you do know what it means to me personally nor have you ever asked. e.g. do you know anything about me at all? I'm just saying this as an example, it's really a rhetorical question so no need to answer.

Some of us have known each other for 10 years. Some less of course. What's it really matter? The only thing that matters to me is that people have died, people have been born, people have done well, people have struggled, people found no answers, people did find answers, and in the middle of all that people found friends who helped them through it. Some with relevant information. Some with a hug for support. Some came bearing gifts, Some others send messages privately. Some others barely speak yet we know they love and care for us or others nonetheless.

Heck, a lot of us actually don't get out a lot and find it barely impossible to make friends anywhere else, let alone go shopping or do regular things. We need to remember that there's a whole lot of stuff goes on in people's lives that you or I probably know nothing about. I prefer to try to learn a little about people 'cause I love people and I care about them and what's going on in their lives.

:/

[Thelma]

No offence taken

After saying that I have to tell you I have been around since the very first beginning of what became Braintalk. We tried a newsletter there. We did the petition Do you remember what hapened? It was so well received as was the annual meeting we planned to take place and then all H broke out.

Members didn't want to read old stories as they called them nor did they want to hear about what was of interest on other forums. seems much of what was written had already been on the site in one forum or another.

I am not being negative Lara just to be a pain. Been there and done that. Do you remember Whitey from Aussie land. wow she took us to task over just the suggestion snd I wish now I had of listened to her. It was me and Giraffe and boy were we sorry about it.

You are right I don't know much about you but I think you don't know much about me, right? You are only guessing about me but I am not guessing about a newsletter.

So I will let you all work it out and while you do please heed what a mess it can evolve into.

Having to write this is a good portent of what it can be like.

That is when strangers assume about each other and then the fur flies. It is easy to do the paper but when the words need to be monitored or edited then the fun begins.

And there is no way of pleasing everyone about many things but changing their words or not printing something and you will be fried in every forum they go to.

It is just so unrewrding


PS If you want to talk to me you know how to and I can be found here or in the ALs or Parkisons forums and sometimes addiction.

[Doody]

Originally Posted by Lara

Howdy Doody. lol I love that. I remember that saying from a tv show from the US that I can't remember the name of at present. Where is my brain?/

LOL Lara! Yes, I watched Howdy Doody every time it was on. And...it was aptly named The Howdy Doody Show. Buffalo Bob and Clarabell were his most frequent sidekicks. As a matter of fact, Clarabell the clown was played by Bob Keeshan who later became Captain Kangaroo.

[Curious]

[quote=Thelma;99981


What exactly is this site in everyones mind then. Is it to be a social club for chit chat or a serious entity in the world of neurological help.

Better decide soon.[/quote]

and why is that? we have nothing to decide. we are doing just fine in the direction we are going. we offer both. if you only like the non caring data sites. go for it.

seems to me even the most die hard research posters here chime in and offer support.