re: Possibility of Changing the list name to MultipleSystemAtrophy

[Guest guest]

Just to let you know, I've written and broached the subject of the

possibility of a name change of the list from " shydrager "

to " MultipleSystemAtrophy " (or something similar) with Vanderbilt.

No response as yet. Even if they say it's OK to go ahead, I'd still

need to give some more thought to this as there are a few things we'd

need to make sure of.

1. Would there be a way to forward people who find the old group on

to the new one? We have the website advertised all over the web on

various bulletin boards now as http://groups.yahoo.com/group/shydrager

If people still try to go there and can't find us that would be

unacceptable.

2. Would we be able to migrate all the Files, Bookmarks and

Reminders over to a new site? There is a lot of time invested in

those links and I'd hate to lose them and have to redo them all over

again.

3. Would the people who use email to post to the list be able to

make the transition quickly or would this be a major disruption? It

seems to me it's a simpler matter for those who use the website...

assuming we can forward people to the new site. But those who use

email would need to remember the new email address and start using it

right away to post messages as soon as a change occured. The last

time we changed there were only 100 to 150 subscribers. Now there

are nearly 700. Most seem to use the website though so it might

still be manageable.

If people really want this I'll do my best to come up with a plan to

get it done with minimum interruption. If the majority don't want it

then I don't see the point in going through with the exercise.

Right now I don't have a sense of what the majority want. So.... I

have an idea.

I will submit a Poll on the site asking for people's opinion and in a

few months we'll see what the results are. Please don't write to me

privately on this topic right now as I am too swamped with other

tasks I need to accomplish before I leave on vacation in less than

two weeks.

This is something that can certainly wait a few more months and we

don't want to madly rush in without considering all the issues.

Hugs,

Pam

> > > >

> > > > For those who are new or who haven't read this yet I want to

make sure

> you

> > > > know... because I'm still getting people writing me who don't

realize

> > > this.

> > > >

> > > > Multiple System Atrophy is the NEW name for Shy-Drager

Syndrome (SDS).

> It

> > > > is also the NEW name for Striatonigral Degeneration(SND). In

fact it

> > > isn't

> > > > even that new. It was 1969 when Drs. Graham and Oppenheimer

realized

> that

> > > > Shy-Drager Syndrome, Striatonigral Degeneration and some

cases of

> > > > non-hereditary Olivopontocerebellar atrophy(OPCA) were

actually ONE

> > > DISEASE.

> > > > They knew this because they observed something in common in

autopsies

> on

> > > the

> > > > brains of people who had been diagnosed with these three

disorders

> which

> > > > before that time were thought to be separate diseases. They

decided

> to

> > > come

> > > > up with a new name for this disease... Multiple System

Atrophy. This

> name

> > > > has held up over time and is now the accepted terminology

recommended

> by

> > > the

> > > > Consensus Committee on Multiple System Atrophy.

> > > >

> > > > >From http://www.emedicine.com/NEURO/topic354.htm :

> > > > " In 1969, Graham and Oppenheimer coined the term multiple

system

> atrophy

> > > > (MSA) to combine the common features seen in the 3

manifestations. The

> > > > " consensus statement on the diagnosis of multiple system

atrophy " in

> 1999

> > > > recommended the use of MSA-P to replace SND, and MSA-C for

sporadic

> OPCA.

> > > > The consensus group also concluded that the term Shy-Drager

syndrome

> is no

> > > > longer useful. They described the clinical features of the

disease and

> set

> > > > the criteria for the diagnosis of possible, probable, and

definite

> MSA "

> > > >

> > > > See also http://www.emedicine.com/neuro/topic671.htm

[Guest guest]

I say let's not rock the boat. A simple paragraph to new members should suffice in explaination to the correlation of MSA and Shy-Drayger

-- re: Possibility of Changing the list name to "MultipleSystemAtrophy"

Just to let you know, I've written and broached the subject of the possibility of a name change of the list from "shydrager" to "MultipleSystemAtrophy" (or something similar) with Vanderbilt. No response as yet. Even if they say it's OK to go ahead, I'd still need to give some more thought to this as there are a few things we'd need to make sure of.1. Would there be a way to forward people who find the old group on to the new one? We have the website advertised all over the web on various bulletin boards now as http://groups.yahoo.com/group/shydragerIf people still try to go there and can't find us that would be unacceptable.2. Would we be able to migrate all the Files, Bookmarks and Reminders over to a new site? There is a lot of time invested in those links and I'd hate to lose them and have to redo them all over again.3. Would the people who use email to post to the list be able to make the transition quickly or would this be a major disruption? It seems to me it's a simpler matter for those who use the website... assuming we can forward people to the new site. But those who use email would need to remember the new email address and start using it right away to post messages as soon as a change occured. The last time we changed there were only 100 to 150 subscribers. Now there are nearly 700. Most seem to use the website though so it might still be manageable.If people really want this I'll do my best to come up with a plan to get it done with minimum interruption. If the majority don't want it then I don't see the point in going through with the exercise.Right now I don't have a sense of what the majority want. So.... I have an idea. I will submit a Poll on the site asking for people's opinion and in a few months we'll see what the results are. Please don't write to me privately on this topic right now as I am too swamped with other tasks I need to accomplish before I leave on vacation in less than two weeks.This is something that can certainly wait a few more months and we don't want to madly rush in without considering all the issues.Hugs,Pam> > > >> > > > For those who are new or who haven't read this yet I want to make sure> you> > > > know... because I'm still getting people writing me who don't realize> > > this.> > > >> > > > Multiple System Atrophy is the NEW name for Shy-Drager Syndrome (SDS).> It> > > > is also the NEW name for Striatonigral Degeneration(SND). In fact it> > > isn't> > > > even that new. It was 1969 when Drs. Graham and Oppenheimer realized> that> > > > Shy-Drager Syndrome, Striatonigral Degeneration and some cases of> > > > non-hereditary Olivopontocerebellar atrophy(OPCA) were actually ONE> > > DISEASE.> > > > They knew this because they observed something in common in autopsies> on> > > the> > > > brains of people who had been diagnosed with these three disorders> which> > > > before that time were thought to be separate diseases. They decided> to> > > come> > > > up with a new name for this disease... Multiple System Atrophy. This> name> > > > has held up over time and is now the accepted terminology recommended> by> > > the> > > > Consensus Committee on Multiple System Atrophy.> > > >> > > > >From http://www.emedicine.com/NEURO/topic354.htm :> > > > " In 1969, Graham and Oppenheimer coined the term multiple system> atrophy> > > > (MSA) to combine the common features seen in the 3 manifestations. The> > > > "consensus statement on the diagnosis of multiple system atrophy" in> 1999> > > > recommended the use of MSA-P to replace SND, and MSA-C for sporadic> OPCA.> > > > The consensus group also concluded that the term Shy-Drager syndrome> is no> > > > longer useful. They described the clinical features of the disease and> set> > > > the criteria for the diagnosis of possible, probable, and definite> MSA"> > > >> > > > See also http://www.emedicine.com/neuro/topic671.htmIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe