Re: Come join the AchalasiaSupportGroup on Facebook

[Guest guest]

Geoffrey wrote:

>

> I recently joined the AchalasiaSupportGroup on Facebook.

>

I don't do Facebook, but those that do may be interested to know that

Facebook has changed the way feeds works. People who have " liked " a page

and expect to see page updates may be missing many of the updates. This

is probably because Facebook now wants page owners to pay to make sure

everyone gets the updates. Also page owners are finding they can no

longer contact those that liked them.

If you want to be sure you see updates you have to go to the page from

time to time and look for yourself.

https://www.facebook.com/help/promote

For thoughts from a blogger on this see:

http://diabetesupdate.blogspot.com/2012/05/problem-with-facebook.html

notan

[Guest guest]

Norman, what does that mean in English?

Sent from my iPod

On Jun 2, 2012, at 15:38, notan ostrich <notan_ostrich@...> wrote:

> Geoffrey wrote:

> >

> > I recently joined the AchalasiaSupportGroup on Facebook.

> >

>

> I don't do Facebook, but those that do may be interested to know that

> Facebook has changed the way feeds works. People who have " liked " a page

> and expect to see page updates may be missing many of the updates. This

> is probably because Facebook now wants page owners to pay to make sure

> everyone gets the updates. Also page owners are finding they can no

> longer contact those that liked them.

>

> If you want to be sure you see updates you have to go to the page from

> time to time and look for yourself.

>

> https://www.facebook.com/help/promote

> For thoughts from a blogger on this see:

> http://diabetesupdate.blogspot.com/2012/05/problem-with-facebook.html

>

> notan

>

>

[Guest guest]

Sorry Notan, my iPod auto " corrected " your

name to " Norman. " . So much for technology!

Sent from my iPod

On Jun 2, 2012, at 17:42, Faith Weiss <weissf@...> wrote:

> Norman, what does that mean in English?

>

> Sent from my iPod

>

> On Jun 2, 2012, at 15:38, notan ostrich <notan_ostrich@...> wrote:

>

> > Geoffrey wrote:

> > >

> > > I recently joined the AchalasiaSupportGroup on Facebook.

> > >

> >

> > I don't do Facebook, but those that do may be interested to know that

> > Facebook has changed the way feeds works. People who have " liked " a page

> > and expect to see page updates may be missing many of the updates. This

> > is probably because Facebook now wants page owners to pay to make sure

> > everyone gets the updates. Also page owners are finding they can no

> > longer contact those that liked them.

> >

> > If you want to be sure you see updates you have to go to the page from

> > time to time and look for yourself.

> >

> > https://www.facebook.com/help/promote

> > For thoughts from a blogger on this see:

> > http://diabetesupdate.blogspot.com/2012/05/problem-with-facebook.html

> >

> > notan

> >

> >

[Guest guest]

I think that there is some confusion because there is a Facebook " fan page "

called Achalasia Support Group and a Facebook " group " called Achalasia

Support Group. The fan page is pretty useless, IMHO, but the support group

is a nice sized group of achalasia sufferers. It is a closed group, meaning

that an administrator has to approve your request to join, but then you can

basically have a conversational post, or chat with other group members.

On Sat, Jun 2, 2012 at 5:58 PM, Faith Weiss <weissf@...> wrote:

> **

>

>

> Sorry Notan, my iPod auto " corrected " your

> name to " Norman. " . So much for technology!

>

> Sent from my iPod

>

>

> On Jun 2, 2012, at 17:42, Faith Weiss <weissf@...> wrote:

>

> > Norman, what does that mean in English?

> >

> > Sent from my iPod

> >

> > On Jun 2, 2012, at 15:38, notan ostrich <notan_ostrich@...> wrote:

> >

> > > Geoffrey wrote:

> > > >

> > > > I recently joined the AchalasiaSupportGroup on Facebook.

> > > >

> > >

> > > I don't do Facebook, but those that do may be interested to know that

> > > Facebook has changed the way feeds works. People who have " liked " a

> page

> > > and expect to see page updates may be missing many of the updates.

> This

> > > is probably because Facebook now wants page owners to pay to make sure

> > > everyone gets the updates. Also page owners are finding they can no

> > > longer contact those that liked them.

> > >

> > > If you want to be sure you see updates you have to go to the page from

> > > time to time and look for yourself.

> > >

> > > https://www.facebook.com/help/promote

> > > For thoughts from a blogger on this see:

> > > http://diabetesupdate.blogspot.com/2012/05/problem-with-facebook.html

> > >

> > > notan

> > >

> > >

[Guest guest]

You are very correct Amber.

Notan - You are right about pages but the information I posted was about a

Group. Groups work differently than Pages.

What I like about using Facebook Groups is that it is much easier to follow

a particular threaded message than here in this email group. While I think

great information is shared here, I think the same information is also

shared in the Facebook Group as well. For me though, I wish there was an

official Achalasia Forum that was able to gather all the information from

the many different places people post valuable information about this

disease so that people could go to that centralized resource to learn,

converse, and contribute about Achalasia.

Does anyone know if there is an official well organized Achalasia

Foundation that is working to this accomplish this.

Geoffrey (Woodbridge, VA)

On Sat, Jun 2, 2012 at 10:53 PM, Amber Pawula-Marcin <amber.pawula@...

> wrote:

> I think that there is some confusion because there is a Facebook " fan page "

> called Achalasia Support Group and a Facebook " group " called Achalasia

> Support Group. The fan page is pretty useless, IMHO, but the support group

> is a nice sized group of achalasia sufferers. It is a closed group, meaning

> that an administrator has to approve your request to join, but then you can

> basically have a conversational post, or chat with other group members.

>

> On Sat, Jun 2, 2012 at 5:58 PM, Faith Weiss <weissf@...> wrote:

>

> > **

> >

> >

> > Sorry Notan, my iPod auto " corrected " your

> > name to " Norman. " . So much for technology!

> >

> > Sent from my iPod

> >

> >

> > On Jun 2, 2012, at 17:42, Faith Weiss <weissf@...> wrote:

> >

> > > Norman, what does that mean in English?

> > >

> > > Sent from my iPod

> > >

> > > On Jun 2, 2012, at 15:38, notan ostrich <notan_ostrich@...> wrote:

> > >

> > > > Geoffrey wrote:

> > > > >

> > > > > I recently joined the AchalasiaSupportGroup on Facebook.

> > > > >

> > > >

> > > > I don't do Facebook, but those that do may be interested to know that

> > > > Facebook has changed the way feeds works. People who have " liked " a

> > page

> > > > and expect to see page updates may be missing many of the updates.

> > This

> > > > is probably because Facebook now wants page owners to pay to make

> sure

> > > > everyone gets the updates. Also page owners are finding they can no

> > > > longer contact those that liked them.

> > > >

> > > > If you want to be sure you see updates you have to go to the page

> from

> > > > time to time and look for yourself.

> > > >

> > > > https://www.facebook.com/help/promote

> > > > For thoughts from a blogger on this see:

> > > >

> http://diabetesupdate.blogspot.com/2012/05/problem-with-facebook.html

> > > >

> > > > notan

> > > >

> > > >

[Guest guest]

Geoffrey,

 

I don't know of any, but I think that's an awesome idea as well.

________________________________

From: Geoffrey Crego <gcrego@...>

achalasia

Sent: Sunday, June 3, 2012 10:04 AM

Subject: Re: Come join the AchalasiaSupportGroup on Facebook

 

You are very correct Amber.

Notan - You are right about pages but the information I posted was about a

Group. Groups work differently than Pages.

What I like about using Facebook Groups is that it is much easier to follow

a particular threaded message than here in this email group. While I think

great information is shared here, I think the same information is also

shared in the Facebook Group as well. For me though, I wish there was an

official Achalasia Forum that was able to gather all the information from

the many different places people post valuable information about this

disease so that people could go to that centralized resource to learn,

converse, and contribute about Achalasia.

Does anyone know if there is an official well organized Achalasia

Foundation that is working to this accomplish this.

Geoffrey (Woodbridge, VA)

On Sat, Jun 2, 2012 at 10:53 PM, Amber Pawula-Marcin <amber.pawula@...

> wrote:

> I think that there is some confusion because there is a Facebook " fan page "

> called Achalasia Support Group and a Facebook " group " called Achalasia

> Support Group. The fan page is pretty useless, IMHO, but the support group

> is a nice sized group of achalasia sufferers. It is a closed group, meaning

> that an administrator has to approve your request to join, but then you can

> basically have a conversational post, or chat with other group members.

>

> On Sat, Jun 2, 2012 at 5:58 PM, Faith Weiss <weissf@...> wrote:

>

> > **

> >

> >

> > Sorry Notan, my iPod auto " corrected " your

> > name to " Norman. " . So much for technology!

> >

> > Sent from my iPod

> >

> >

> > On Jun 2, 2012, at 17:42, Faith Weiss <weissf@...> wrote:

> >

> > > Norman, what does that mean in English?

> > >

> > > Sent from my iPod

> > >

> > > On Jun 2, 2012, at 15:38, notan ostrich <notan_ostrich@...> wrote:

> > >

> > > > Geoffrey wrote:

> > > > >

> > > > > I recently joined the AchalasiaSupportGroup on Facebook.

> > > > >

> > > >

> > > > I don't do Facebook, but those that do may be interested to know that

> > > > Facebook has changed the way feeds works. People who have " liked " a

> > page

> > > > and expect to see page updates may be missing many of the updates.

> > This

> > > > is probably because Facebook now wants page owners to pay to make

> sure

> > > > everyone gets the updates. Also page owners are finding they can no

> > > > longer contact those that liked them.

> > > >

> > > > If you want to be sure you see updates you have to go to the page

> from

> > > > time to time and look for yourself.

> > > >

> > > > https://www.facebook.com/help/promote

> > > > For thoughts from a blogger on this see:

> > > >

> http://diabetesupdate.blogspot.com/2012/05/problem-with-facebook.html

> > > >

> > > > notan

> > > >

> > > >

[Guest guest]

Geoffery,

There is a foundation in the works, but creating one take a lot of work... and a

lot of money..

It is in process tho...

Carolyn

mom to Cameron ...

myo'd and fundo'd in MAY 05

________________________________

________________________________

From: Shamira <shareedanieal@...>

" achalasia " <achalasia >

Sent: Sunday, June 3, 2012 8:17 AM

Subject: Re: Come join the AchalasiaSupportGroup on Facebook

 

Geoffrey,

 

I don't know of any, but I think that's an awesome idea as well.

________________________________

From: Geoffrey Crego <gcrego@...>

achalasia

Sent: Sunday, June 3, 2012 10:04 AM

Subject: Re: Come join the AchalasiaSupportGroup on Facebook

 

You are very correct Amber.

Notan - You are right about pages but the information I posted was about a

Group. Groups work differently than Pages.

What I like about using Facebook Groups is that it is much easier to follow

a particular threaded message than here in this email group. While I think

great information is shared here, I think the same information is also

shared in the Facebook Group as well. For me though, I wish there was an

official Achalasia Forum that was able to gather all the information from

the many different places people post valuable information about this

disease so that people could go to that centralized resource to learn,

converse, and contribute about Achalasia.

Does anyone know if there is an official well organized Achalasia

Foundation that is working to this accomplish this.

Geoffrey (Woodbridge, VA)

On Sat, Jun 2, 2012 at 10:53 PM, Amber Pawula-Marcin <amber.pawula@...

> wrote:

> I think that there is some confusion because there is a Facebook " fan page "

> called Achalasia Support Group and a Facebook " group " called Achalasia

> Support Group. The fan page is pretty useless, IMHO, but the support group

> is a nice sized group of achalasia sufferers. It is a closed group, meaning

> that an administrator has to approve your request to join, but then you can

> basically have a conversational post, or chat with other group members.

>

> On Sat, Jun 2, 2012 at 5:58 PM, Faith Weiss <weissf@...> wrote:

>

> > **

> >

> >

> > Sorry Notan, my iPod auto " corrected " your

> > name to " Norman. " . So much for technology!

> >

> > Sent from my iPod

> >

> >

> > On Jun 2, 2012, at 17:42, Faith Weiss <weissf@...> wrote:

> >

> > > Norman, what does that mean in English?

> > >

> > > Sent from my iPod

> > >

> > > On Jun 2, 2012, at 15:38, notan ostrich <notan_ostrich@...> wrote:

> > >

> > > > Geoffrey wrote:

> > > > >

> > > > > I recently joined the AchalasiaSupportGroup on Facebook.

> > > > >

> > > >

> > > > I don't do Facebook, but those that do may be interested to know that

> > > > Facebook has changed the way feeds works. People who have " liked " a

> > page

> > > > and expect to see page updates may be missing many of the updates.

> > This

> > > > is probably because Facebook now wants page owners to pay to make

> sure

> > > > everyone gets the updates. Also page owners are finding they can no

> > > > longer contact those that liked them.

> > > >

> > > > If you want to be sure you see updates you have to go to the page

> from

> > > > time to time and look for yourself.

> > > >

> > > > https://www.facebook.com/help/promote

> > > > For thoughts from a blogger on this see:

> > > >

> http://diabetesupdate.blogspot.com/2012/05/problem-with-facebook.html

> > > >

> > > > notan

> > > >

> > > >

[Guest guest]

Geoffrey wrote:

>

> Does anyone know if there is an official well organized Achalasia

> Foundation that is working to this accomplish this.

>

Not sure what makes something " official " but at one time this was the

site if you wanted information or conversation and support. I still like

this site because I prefer email delivered to my computer instead of web

pages and web sites for access to conversations. I don't like Facebook

so even if this site goes down a Facebook group will not be where you

will find me.

notan

[Guest guest]

It is unfortunately, but I think because Achalasia is deemed " non-fatal " ,

it doesn't get the same level of support (or research) as other diseases

do. My family is a carrier of Kennedy's disease, a rare MD-like disorder

that primarily strikes men in their 40's or later, and even they have an

official website and forum, and a far better network of organization than

us Achalasia sufferers seem to, even though we are something like 1 in

20,000 and they are more like 1 in 50,000. I think the perception of the

disease has a lot to do with the level of funding available.

On Sun, Jun 3, 2012 at 1:05 PM, notan ostrich <notan_ostrich@...> wrote:

> **

>

>

> Geoffrey wrote:

> >

> > Does anyone know if there is an official well organized Achalasia

> > Foundation that is working to this accomplish this.

> >

>

> Not sure what makes something " official " but at one time this was the

> site if you wanted information or conversation and support. I still like

> this site because I prefer email delivered to my computer instead of web

> pages and web sites for access to conversations. I don't like Facebook

> so even if this site goes down a Facebook group will not be where you

> will find me.

>

>

> notan

>

>

[Guest guest]

Carolyn wrote:

>

> There is a foundation in the works, but creating one take a lot of

> work... and a lot of money.. \

>

Setting up a foundation can take a lot of work and it can take a lot

of money, but neither is always necessary. If you can cookie cutter it

after similar foundations and bypass the major legal and accounting

help, depending on the state, it does not always take a lot. But, you do

want to be sure it is set up right and your purpose statement is good.

The real trick is in how the foundation is ran. If you think setting it

up takes money just wait till you actually try to do things. You can

either go through a lot of volunteers and forever be trying to train

them instead of doing things yourself, or you can hire employees and

then forever be in the business of trying to raise money to stay in the

business.

Before anyone asks. I have done my NP foundation time and have no desire

to serve on another.

notan

[Guest guest]

Amber wrote:

> It is unfortunately, but I think because Achalasia is deemed " non-fatal " ,

> it doesn't get the same level of support (or research) as other diseases

> do.

People say that but what research would you have them do that is not

already being done or has been done? I see a lot of research that has

and is being done. Realize too that not all research that applies to

achalasia has the name achalasia attached to it. There is work on nerves

and nitric oxide that applies. There is work on genetics that may apply.

There is work on the immune system that applies. There is research on

megaesophagus in animals. There is research in other esophageal

disorders. The answers for achalasia may even come from unexpected

research sources. Often in science you can't solve a problem in one

field until you discover something in another field. Not to say that

direct research is not important but it isn't the end all either. You

can also turn that around and see why even though achalasia is rare it

is something that scientists, not just medical researchers, would be

interested in. An answer in achalasia could possibly be important for

many other disorders and medical and biological sciences in general.

Achalasia is an interesting problems from a science perspective. Even

the fact that answers to the cause are so hard to get is interesting.

That draws scientists to research it.

> ...they have an

> official website and forum, and a far better network of organization than

> us Achalasia sufferers seem to, even though we are something like 1 in

> 20,000 and they are more like 1 in 50,000.

Not saying it isn't better, but what in your mind makes it better?

> I think the perception of the

> disease has a lot to do with the level of funding available.

It probably does affect the donation appeal. Not all science for

achalasia is from funds dedicated to achalasia research. Some people

like to fund the underdog, so to speak. In this case disorders that

don't appeal to others. A way of making research broad.

I don't want to over sugar coat this. It may be that things would be

better if achalasia was a more sexy disorder. But, It may also be that

science isn't ready, knowledge and tool wise, to solve achalasia no

matter how much money you throw at it even if it was sexy. Be glad for

science research, even if it is about galaxies far far away, because you

don't know what will lead to the answers you hope for. Some piece of

equipment developed to aim sensors at X-rays from deep space may be the

key to some new particle scanner to look at the molecular workings in a

cell that could unlock the achalasia secrets. Who knows

notan

[Guest guest]

Life is interesting, lol! I do belong to facebook, but find the unending

Hitlerishness of the owners beyond irritating (YOU WILL *HAVE* TIMELINE, YOU

WILL TURN YOUR PICTURES OVER FOR ADS, YOU WILL. . . . ). I found this place

because every time I had a new question about this damned disease, and googled,

it showed up near the top of the page with several threads on the subject.

Yesterday, searching *specifically* on facebook for the Achalasia Support Group,

I ONLY got the fan page. And if there is a way to SEARCH at facebook for a

specific topic/thread/comment/posting history, I surely am unable to locate how

-- once it scrolls off the page, it's gone. Forevah. Here: easy peasy.

Unlike Notan, I hate both 's AND facebook's home delivery system -- just

coming here is clean as a whistle, and very searchable. I come, check the

messages page, open each message in a new tab, read, and respond, or close. OR,

I may scroll down, expand all messages in that thread and just read in order of

response. When I first came, I just started at the beginning, on the home page,

by month, and just read everything, lol! I was SO starved for information, it

was like a fresh drink of water.

So, seems like there's something for everyone, somewhere, somehow. And good

thang.

Live long and prosper. . . .

WV

> > > > > >

> > > > > > I recently joined the AchalasiaSupportGroup on Facebook.

> > > > > >

> > > > >

> > > > > I don't do Facebook, but those that do may be interested to know that

> > > > > Facebook has changed the way feeds works. People who have " liked " a

> > > page

> > > > > and expect to see page updates may be missing many of the updates.

> > > This

> > > > > is probably because Facebook now wants page owners to pay to make

> > sure

> > > > > everyone gets the updates. Also page owners are finding they can no

> > > > > longer contact those that liked them.

> > > > >

> > > > > If you want to be sure you see updates you have to go to the page

> > from

> > > > > time to time and look for yourself.

> > > > >

> > > > > https://www.facebook.com/help/promote

> > > > > For thoughts from a blogger on this see:

> > > > >

> > http://diabetesupdate.blogspot.com/2012/05/problem-with-facebook.html

> > > > >

> > > > > notan

> > > > >

> > > > >

[Guest guest]

wrote:

>

> I found this place because every time I had a new question about this

> damned disease, and googled, it showed up near the top of the page

> with several threads on the subject.

>

Yes. That is one reason I like to post to this group. If I post

something useful it can appear in search engines for people who don't

even know this group. or any like it, exist.

> Unlike Notan, I hate both 's AND facebook's home delivery system

> -- just coming here is clean as a whistle, and very searchable.

>

I use Thunderbird to receive each message as an individual email, not

the digest. In Thunderbird I have a filter that puts all the messages

from this group in one folder just for them. I can search that folder

many ways, more so than on the site. I can also sort the messages a

number of ways. I can view by thread or not. I can view by read, unread,

or both. I can mark messages with color codes. Often I mark them to come

back to them to respond latter. I can search my sent folder to find

messages I sent before. I can search my drafts folder for messages I

started to send but decided not to. Messages that are about achalasia

but don't come from the achalasia server get filtered to another

folder that I may never respond to because most of those messages are

private and would not help as many people. Not a problem with the

group but some systems drop all kinds of messages in together, public

and private and junk.

notan

[Guest guest]

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

I don't like Facebook

so even if this site goes down a Facebook group will not be where you

will find me.

notan

Hopefully that will not occur. If it does, I for one would like to have you

continue to be involved with us. It is the content that counts.

Dan