Re: The Journey/Operation Oprah update

[Guest guest]

Actually, the Jeffery Journey has been a part of this list for many years,

...long before you subscribed. Most of us are featured in the book. In

fact, it is the story of us all...those of us with SMA, that is. I don't

understand why you would object to Helen's post.

Vicki Jurney-

Director

Pet Pals of Texas

www.petpalsoftexas.org

[Guest guest]

Spamming is unsolicited e--mails which are randomly sent out. Usually the

senders of " junk " spam emails is unknown to the recipient of said email. We all

know Helen, and her request is part of a project that we support. I have no

doubt that the administrator of this group would have any objection to her

request since sending a person's e-mail address is voluntary on their part.

Vicki Jurney-

Director

Pet Pals of Texas

www.petpalsoftexas.org

[Guest guest]

I was under the impression that it's not polite to collect people's

email addresses from groups like this and start sending bulk messages

without asking for permission first.

> I have just sent out a mass e-mail update (with info about other

projects, etc.) to a LOT of

> folks. If you've been receiving them in the past and didn't receive

one yesterday or today,

> please let me know, as it may have been returned for some reason.

> Helen (Baldwin) - P.O. Box 964 - Jefferson, NC 28640

>

[Guest guest]

Hi Helen:

I just think is unfamiliar with this project, and how much it means to

us. That's why he has assumed the role of list police.

Vicki

[Guest guest]

I don't object to her post here. I am grateful for all of the

information everyone shares.

But, it's not respectful etiquette to collect people's emails from

this list without permission and start sending them updates outside

of the group. That's called spamming.

I am sorry I did not specify.

>

> Actually, the Jeffery Journey has been a part of this list for

many years,

> ...long before you subscribed. Most of us are featured in the

book. In

> fact, it is the story of us all...those of us with SMA, that is. I

don't

> understand why you would object to Helen's post.

>

> Vicki Jurney-

> Director

> Pet Pals of Texas

> www.petpalsoftexas.org

>

>

>

[Guest guest]

Hi, - thank you for writing and expressing your concern about

the way I've collected e-mails without permission only to turn around

and send unsolicited bulk e-mails. I started to respond to you

privately but decided perhaps I should write a note to the group in

case others share your thinking. Your suggestion has never come to my

attention before, but that doesn't mean there aren't others who agree

with you.

The reason I have been gathering e-mails from folks who post on

various SMA sites is that some don't choose to get individual posts

in group settings like SMA Friends, and they don't have/take time to

check sites/guestbooks/message boards for posts on a regular basis. I

am trying to reach as many SMA folks as possible! The reason I don't

stop to ask for permission is simply a matter of available time, and

until now, it has never come up. When I wrote that I was bordering on

obsession with this project, I wasn't kidding! Since being hurled

into the world of SMA 9 years ago, life changed for us in a big way,

mostly for the good but certainly not without a sense of loss with

's death. I have stayed busy on 's behalf, but I also

have a husband, two other children (one in college and another a high

school senior), and a few animals. Adding to the pile this summer was

the recent death of my father. Etc., etc., etc.

Rather than run from SMA, I opted to stick around and see if I could

be of service in some capacity. Initially, I mainly wanted to ease

the paths of others and help protect our other children from a rerun

of SMA like so many others have done. Some folks chair foundations,

some host incredible web sites, some organize insanely successful

fundraisers. I wrote a book, and while I think it's pretty good(!), I

am partial to the special dedication, as it provides a unique

connection between (and us) and others in this remarkable

group. By now, I'm more than a little hooked to others in this

extended family and really enjoy being here

I do not ever share e-mail addresses, which is one reason there are

so many links to others' projects. I am happy to remove anyone who

wishes to be removed and am pleased that out of an average of over

1000 active e-mail addresses over the past few years, only five or

six have requested removal, three because they learned they weren't

dealing with SMA after all.

If you - or anyone else - consider the mass e-mails a nuisance and

would like to be removed, please let me know, as my purpose in

spending time and energy on this is certainly not to cause

disruption. I merely want to help squelch the destructive nature of

this particular beast, and this is a way I think I can participate.

Whether or not you decide to remain on The List, , I would love

to add 's name to the dedication! Like Vicki wrote, there are

many folks active in SMA Friends who are listed in the book's

dedication.

Thanks again for sharing your thoughts about this, and please feel

free to e-mail me should you have additional concerns.

Sincerely,

Helen

PS - , your second post just appeared regarding my 'spamming.' I

am no genius when it comes to computer lingo, but I personally

consider spamming bulk 'junk' from source completely foreign to me.

While I send bulk e-mails in alphabetized groups to save myself a LOT

of time and feign a bit of organization, AND they are sent

unsolicited at least initially, I don't think what I send is 'junk,'

and there is a legitimate purpose for their existence. Again, though,

I'll be happy to remove you from the list if you'd prefer.

PS - Thanks, Vicki

On Aug 7, 2006, at 12:18 PM, wrote:

> I was under the impression that it's not polite to collect people's

> email addresses from groups like this and start sending bulk messages

> without asking for permission first.

>

>

>

>

>

>> I have just sent out a mass e-mail update (with info about other

>>

> projects, etc.) to a LOT of

>

>> folks. If you've been receiving them in the past and didn't receive

>>

> one yesterday or today,

>

>> please let me know, as it may have been returned for some reason.

>>

>

>

>

>> Helen (Baldwin) - P.O. Box 964 - Jefferson, NC 28640

>>

>>

>

>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

>

>

[Guest guest]

I for one ( & one of many) certainly appreciate your

massive effort to bring awareness to a

disease/condition that is relatively unknown to a vast

amount of the general population. I've read your book

about your son Jeffery - and am so grateful you put it

together.

Helen - Thank you for all you've done and continue to

try to do for the efforts to find a cure/treatment for

SMA. You've most certainly made a profound impact -

and I'm sure somewhere your is bragging to

others about his fantastic Mom...

Mitch , Aurora, OH

--- Helen Baldwin <jeffreyb@...> wrote:

> Hi, - thank you for writing and expressing

> your concern about

> the way I've collected e-mails without permission

> only to turn around

> and send unsolicited bulk e-mails. I started to

> respond to you

> privately but decided perhaps I should write a note

> to the group in

> case others share your thinking. Your suggestion has

> never come to my

> attention before, but that doesn't mean there aren't

> others who agree

> with you.

>

> The reason I have been gathering e-mails from folks

> who post on

> various SMA sites is that some don't choose to get

> individual posts

> in group settings like SMA Friends, and they don't

> have/take time to

> check sites/guestbooks/message boards for posts on a

> regular basis. I

> am trying to reach as many SMA folks as possible!

> The reason I don't

> stop to ask for permission is simply a matter of

> available time, and

> until now, it has never come up. When I wrote that I

> was bordering on

> obsession with this project, I wasn't kidding! Since

> being hurled

> into the world of SMA 9 years ago, life changed for

> us in a big way,

> mostly for the good but certainly not without a

> sense of loss with

> 's death. I have stayed busy on 's

> behalf, but I also

> have a husband, two other children (one in college

> and another a high

> school senior), and a few animals. Adding to the

> pile this summer was

> the recent death of my father. Etc., etc., etc.

>

> Rather than run from SMA, I opted to stick around

> and see if I could

> be of service in some capacity. Initially, I mainly

> wanted to ease

> the paths of others and help protect our other

> children from a rerun

> of SMA like so many others have done. Some folks

> chair foundations,

> some host incredible web sites, some organize

> insanely successful

> fundraisers. I wrote a book, and while I think it's

> pretty good(!), I

> am partial to the special dedication, as it provides

> a unique

> connection between (and us) and others in

> this remarkable

> group. By now, I'm more than a little hooked to

> others in this

> extended family and really enjoy being here

>

> I do not ever share e-mail addresses, which is one

> reason there are

> so many links to others' projects. I am happy to

> remove anyone who

> wishes to be removed and am pleased that out of an

> average of over

> 1000 active e-mail addresses over the past few

> years, only five or

> six have requested removal, three because they

> learned they weren't

> dealing with SMA after all.

>

> If you - or anyone else - consider the mass e-mails

> a nuisance and

> would like to be removed, please let me know, as my

> purpose in

> spending time and energy on this is certainly not to

> cause

> disruption. I merely want to help squelch the

> destructive nature of

> this particular beast, and this is a way I think I

> can participate.

>

> Whether or not you decide to remain on The List,

> , I would love

> to add 's name to the dedication! Like Vicki

> wrote, there are

> many folks active in SMA Friends who are listed in

> the book's

> dedication.

>

> Thanks again for sharing your thoughts about this,

> and please feel

> free to e-mail me should you have additional

> concerns.

>

> Sincerely,

>

> Helen

>

> PS - , your second post just appeared regarding

> my 'spamming.' I

> am no genius when it comes to computer lingo, but I

> personally

> consider spamming bulk 'junk' from source completely

> foreign to me.

> While I send bulk e-mails in alphabetized groups to

> save myself a LOT

> of time and feign a bit of organization, AND they

> are sent

> unsolicited at least initially, I don't think what I

> send is 'junk,'

> and there is a legitimate purpose for their

> existence. Again, though,

> I'll be happy to remove you from the list if you'd

> prefer.

>

> PS - Thanks, Vicki

>

>

>

>

>

>

> On Aug 7, 2006, at 12:18 PM, wrote:

>

> > I was under the impression that it's not polite to

> collect people's

> > email addresses from groups like this and start

> sending bulk messages

> > without asking for permission first.

> >

> >

> >

> >

> >

> >> I have just sent out a mass e-mail update (with

> info about other

> >>

> > projects, etc.) to a LOT of

> >

> >> folks. If you've been receiving them in the past

> and didn't receive

> >>

> > one yesterday or today,

> >

> >> please let me know, as it may have been returned

> for some reason.

> >>

> >

> >

> >

> >> Helen (Baldwin) - P.O. Box 964 - Jefferson, NC

> 28640

> >>

> >>

> >

> >

> >

> >

> >

> >

> > A FEW RULES

> >

> > * The list members come from many backgrounds,

> ages and beliefs So all

> > members most be tolerant and respectful to all

> members.

> >

> > * Some adult language and topics (like sexual

> health, swearing..) may

> > occur occasionally in emails. Over use of

> inappropriate language will

> > not be allowed. If your under 16 ask your

> parents/gaurdian before you

> > join the list.

> >

> > * No SPAMMING or sending numerous emails unrelated

> to the topics of

> > spinal muscular atrophy, health, and the daily

> issues of the disabled.

> >

> > Post message:

> > Subscribe:

> -subscribe

> > Unsubscribe:

> -unsubscribe

> >

> > List manager: (Sexy Mature Artist) Email:

> Esma1999@...

> >

> >

> >

> >

> > oogroups.com

> >

> > List manager: (Sexy Mature Artist) Email:

> Esma1999@...

>

=== message truncated ===

__________________________________________________

[Guest guest]

Forgive me for posting here so many times today. This will be my last

for a while. I want to respond to Helen publicly because I feel it is

important to do so.

I know of two SMA Moms who are afraid of participating in any online

SMA groups because of bad experiences they've had with people

collecting information on their children for unspecified purposes.

For several years now, everyone knows that as soon as you post for the

first time on an SMA site or BB, you will begin receiving unsolicited

emails from Helen. I'm sure you are a nice person, Helen, but please

be aware that your actions have creeped out some people. I don't

doubt that you mean well, but there are some other kooky people out

there who's actions are similar to yours in collecting data on kids.

If you ask first before bulk-mailing people, you will not risk being

seen as one of those kooky people.

That's just my humble suggestion. I mean no offense.

>

> Hi, - thank you for writing and expressing your concern about

> the way I've collected e-mails without permission only to turn

around

> and send unsolicited bulk e-mails.

[Guest guest]

Dear ,

I was getting ready to relinquish the computer to our son when your

last note came in.

I am stunned at this note and would love to know to which SMA moms

you are referring - not to bully them or 'creep them out' any

further, but to apologize for whatever I did that made me out to be a

kook... or worse. I almost sound like a pedophile.

I never intended to offend anyone, and I CERTAINLY didn't intend to

'creep out' anyone!!! Jeepers.

I'm also completely in the dark about what data I'm collecting on kids.

Again, I intended to reply to you privately, but on second thought

decided to send this - a final group note - to the entire group in

case the moms I've offended happen to read this.

If I have somehow 'creeped out' anyone reading this, please accept my

humblest apology.

Best,

Helen

On Aug 7, 2006, at 5:11 PM, wrote:

> Forgive me for posting here so many times today. This will be my last

> for a while. I want to respond to Helen publicly because I feel it is

> important to do so.

>

> I know of two SMA Moms who are afraid of participating in any online

> SMA groups because of bad experiences they've had with people

> collecting information on their children for unspecified purposes.

> For several years now, everyone knows that as soon as you post for the

> first time on an SMA site or BB, you will begin receiving unsolicited

> emails from Helen. I'm sure you are a nice person, Helen, but please

> be aware that your actions have creeped out some people. I don't

> doubt that you mean well, but there are some other kooky people out

> there who's actions are similar to yours in collecting data on kids.

> If you ask first before bulk-mailing people, you will not risk being

> seen as one of those kooky people.

>

> That's just my humble suggestion. I mean no offense.

>

>

>

>

>>

>> Hi, - thank you for writing and expressing your concern about

>> the way I've collected e-mails without permission only to turn

>>

> around

>

>> and send unsolicited bulk e-mails.

>>

>

>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

>

>

[Guest guest]

I think I tend to agree with the point made. I

personally requested to be added to Helen's list, based

on a post in this newsgroup, using my private email

address. But my more " public " address was

also added, I'm assuming from the group members

list. Wouldn't it be more proper to make a general

announcement on SMA related boards that invite

people to join the e-list if they want, rather than

just signing all the members of groups up and sending

unsolicited email? Or if various persons that are

interested are found at websites and such, couldn't

they be sent a brief invitation email to see if they

are even interested on being on such list before

summarily adding their address? The current

" sign up every email address related to SMA " method

does strike me as being like a lot of the spam I

get from having my email out there in other

groups.

Jenn

[Guest guest]

Hi Helen,

I was actually surprised when I received an e-mail from you off-list

without having been asked if you could add me. I had already been

asked via SMAFriends and the FSMA message board if I wanted to be

included in your project, and chose not to participate or forward the

names of others I know. It felt a bit presumptuous to then be added

to your list.

I didn't feel strongly enough to ask to be removed, but must agree

with that harvesting e-mails from a web page or the cc fields

of an e-mail and adding them to a mailing list is not generally

accepted as appropriate " netiquette " . It's more appropriate to make

public requests for subscribers on lists such as these.

Advice on recruiting list members from a seasoned net-using advocate:

- Don't harvest e-mail addresses.

- Ask permission before adding a name to a list.

- If people aren't subscribing it may be because 1) they already get

your announcements via a listserv or message board, 2) they're not

interested, or 3) they haven't read the subsriction invitation.

- When seeking subscribers for a list, try to increase the

possibility of the invitation being read by making the request brief

and pointed without mixing other issues or updates.

- Ask people to forward the invitation to others who may be

interested.

- At the beginning each mass mailing provide simple instructions for

unsubscribing.

I hope this is helpful.

Alana

[Guest guest]

oh come on people - we are all here on this list to get information and support

from other sma affected people. so why the hell fuss about email sent once for a

few months ? besides helen`s emails are very informative. i learn from them more

than from posts here. if do not wish to get her annoucments, you can easily let

helen know and i`m sure she`ll take you off the mailing list she has. and one

more thing - david, not everyone, who sends emails or collect emails are junk

senders. so honestly - give a break!

love & light

patie

http://patie80.multiply.com

http://patie.tripod.com