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I went to that page & although I am already in Yahoo, it didn't want to

verify my code. It is right & the only one I have ever used so I

wouldn't FORGET it. so I followed all directions & still couldn't get in

.. It appears only one member is there, I assume that is you . So, how to

isn't getting thru to me .Sorry .

LOVE & HUGS, grandmoMBEv

Summary of Board

As I mentioned before, I am a new member here. I have started going

through the messages since beginning 2002 and noticed that some

posts are quite informative while others no so much.

I have a recommendation to make.

To create another message board just to put in/transfer the very

informative posts. This will significantly facilitate the exchange

of info between us. It will help newbies and getting the most

important knowledge quickly and will help current members in not

having to keep responding to the same questions over and over.

This advice is not coming from laziness on my part. As I mentioned

before, I am the founder and manager of a tropical fish club with

over 1,700 members and have done that for my members. The main club

is called Betta Splendens and I also created several

other " satellite " clubs names Betta Genetic Archives, Betta

Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among

others.

I thought of starting my own Back Up CF club for private use only,

but am thinking that this club could benefit from such a site. The

purpose of the club is not chat but just to transfer the informative

posts. The one I created is

http://health.groups.yahoo.com/group/cfbackup/

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

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,

It's a great Idea, but there are already 45 CF boards on Yahoo, not to

mention the MSN board, and Cystic-l on list serve. This group has the most

members on Yahoo and is focused on CF parents. Cystic-l has a web site that

has boiled down a lot of the questions asked, but it sometimes has outdated

material, the practice and care of CF changes even in the 21 months my wife

and I have been CFParents.

I just filter out all the " that's so nice " posts, the father/husband

bashing, and the completey off topic post. There are several people who

normally have good questions or information to exchange, so I pay attention

to any thread they are participating.

I would like to be able to download all of the old Post so I could use a

better search tool then the one provide by yahoo. But there is only so much

time in the day.

_____

From:

Sent: Wednesday, November 12, 2003 8:18 AM

To: cfparents

Subject: Summary of Board

As I mentioned before, I am a new member here. I have started going

through the messages since beginning 2002 and noticed that some

posts are quite informative while others no so much.

I have a recommendation to make.

To create another message board just to put in/transfer the very

informative posts. This will significantly facilitate the exchange

of info between us. It will help newbies and getting the most

important knowledge quickly and will help current members in not

having to keep responding to the same questions over and over.

This advice is not coming from laziness on my part. As I mentioned

before, I am the founder and manager of a tropical fish club with

over 1,700 members and have done that for my members. The main club

is called Betta Splendens and I also created several

other " satellite " clubs names Betta Genetic Archives, Betta

Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among

others.

I thought of starting my own Back Up CF club for private use only,

but am thinking that this club could benefit from such a site. The

purpose of the club is not chat but just to transfer the informative

posts. The one I created is

http://health.groups.yahoo.com/group/cfbackup/

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Guess what -It finally worked . I just couldn't get the info on the

second age, But that is o.k. thanks , GRDMBEV

Summary of Board

As I mentioned before, I am a new member here. I have started going

through the messages since beginning 2002 and noticed that some

posts are quite informative while others no so much.

I have a recommendation to make.

To create another message board just to put in/transfer the very

informative posts. This will significantly facilitate the exchange

of info between us. It will help newbies and getting the most

important knowledge quickly and will help current members in not

having to keep responding to the same questions over and over.

This advice is not coming from laziness on my part. As I mentioned

before, I am the founder and manager of a tropical fish club with

over 1,700 members and have done that for my members. The main club

is called Betta Splendens and I also created several

other " satellite " clubs names Betta Genetic Archives, Betta

Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among

others.

I thought of starting my own Back Up CF club for private use only,

but am thinking that this club could benefit from such a site. The

purpose of the club is not chat but just to transfer the informative

posts. The one I created is

http://health.groups.yahoo.com/group/cfbackup/

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

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My site doesn't have to be the one that is chosen for putting the

back up. If the founder/manager of this site sets another one up

and people help out, I will be very happy. The goal is to organize

the information in a way to benefit everyone. The fact that there

are 45 other groups out there is ok, as long as we know where to go

to get the info.

" Cystic-l has a web site that has boiled down a lot of the questions

asked... " How do I get to this Cystic-1 site? I am surprised that

we don't have a links section here...I would like to know some other

recommended sites...

Changing topics, my son went through a surgery on Monday to close

the " ostomy " and is doing well. They didn't have to cut intestine

out. He's now wide awake. If everything goes well, he could be

coming home in 3 weeks. I can't wait to see him out of the wires

and with us 24 hours/day...

Regards to all,

> ,

>

> It's a great Idea, but there are already 45 CF boards on Yahoo,

not to

> mention the MSN board, and Cystic-l on list serve. This group has

the most

> members on Yahoo and is focused on CF parents. Cystic-l has a web

site that

> has boiled down a lot of the questions asked, but it sometimes has

outdated

> material, the practice and care of CF changes even in the 21

months my wife

> and I have been CFParents.

>

> I just filter out all the " that's so nice " posts, the

father/husband

> bashing, and the completey off topic post. There are several

people who

> normally have good questions or information to exchange, so I pay

attention

> to any thread they are participating.

>

> I would like to be able to download all of the old Post so I could

use a

> better search tool then the one provide by yahoo. But there is

only so much

> time in the day.

>

>

>

>

>

> _____

>

> From: [mailto:vze238yx@v...]

> Sent: Wednesday, November 12, 2003 8:18 AM

> To: cfparents

> Subject: Summary of Board

>

> As I mentioned before, I am a new member here. I have started

going

> through the messages since beginning 2002 and noticed that some

> posts are quite informative while others no so much.

>

> I have a recommendation to make.

>

> To create another message board just to put in/transfer the very

> informative posts. This will significantly facilitate the

exchange

> of info between us. It will help newbies and getting the most

> important knowledge quickly and will help current members in not

> having to keep responding to the same questions over and over.

>

> This advice is not coming from laziness on my part. As I

mentioned

> before, I am the founder and manager of a tropical fish club with

> over 1,700 members and have done that for my members. The main

club

> is called Betta Splendens and I also created several

> other " satellite " clubs names Betta Genetic Archives, Betta

> Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among

> others.

>

> I thought of starting my own Back Up CF club for private use only,

> but am thinking that this club could benefit from such a site.

The

> purpose of the club is not chat but just to transfer the

informative

> posts. The one I created is

> http://health.groups.yahoo.com/group/cfbackup/

>

>

>

>

>

>

>

>

>

>

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Hi , I am pleased you are trying to locate all the information

that is available. Another site you will enjoy is

cysticfibrosis@...

Put that in your search box & you will get to sign up page. It is truly

a delightful & informative group as well. Most folks are on as many as

they can be , so you hear from many of us all on each.

The best to your wee one with the surgery recovery too. He will be happy

to be home (you will too-hehe)

Take care,

LOVE & HUGS, grandmoMBEV

Summary of Board

>

> As I mentioned before, I am a new member here. I have started

going

> through the messages since beginning 2002 and noticed that some

> posts are quite informative while others no so much.

>

> I have a recommendation to make.

>

> To create another message board just to put in/transfer the very

> informative posts. This will significantly facilitate the

exchange

> of info between us. It will help newbies and getting the most

> important knowledge quickly and will help current members in not

> having to keep responding to the same questions over and over.

>

> This advice is not coming from laziness on my part. As I

mentioned

> before, I am the founder and manager of a tropical fish club with

> over 1,700 members and have done that for my members. The main

club

> is called Betta Splendens and I also created several

> other " satellite " clubs names Betta Genetic Archives, Betta

> Breeding, Betta Illnesses, Betta Inventions, Betta Feeding, among

> others.

>

> I thought of starting my own Back Up CF club for private use only,

> but am thinking that this club could benefit from such a site.

The

> purpose of the club is not chat but just to transfer the

informative

> posts. The one I created is

> http://health.groups.yahoo.com/group/cfbackup/

>

>

>

>

>

>

>

>

>

>

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>

> To create another message board just to put in/transfer the very

> informative posts. This will significantly facilitate the exchange

> of info between us. It will help newbies and getting the most

> important knowledge quickly and will help current members in not

> having to keep responding to the same questions over and over.

Who decides which post is informative and fatual enough to keep?

jan

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,

When Zach was first diagnosed I found a lot of useful information at

this website:

http://personal.nbnet.nb.ca/normap/CF.htm

I also think the Orenstein book is very helpful to the newly

diagnosed. The newest edition is available at Amazon.com.

I couldn't wait to get Zach out of the NICU either. He had a

meconium ileus but only needed enemas to clear it. I hated waiting

to get permission to hold him each day and then trying to navigate

all of the wires, etc. I know they were all totally necessary, but

as a new mom it was really hard to accept.

I kept telling myself that as soon as I got him home I was going to

hold him for one hour straight and no one could take him from me.

I held him for that hour and a lot more.

I hope your baby is home soon!

Sara

> > ,

> >

> > It's a great Idea, but there are already 45 CF boards on Yahoo,

> not to

> > mention the MSN board, and Cystic-l on list serve. This group

has

> the most

> > members on Yahoo and is focused on CF parents. Cystic-l has a

web

> site that

> > has boiled down a lot of the questions asked, but it sometimes

has

> outdated

> > material, the practice and care of CF changes even in the 21

> months my wife

> > and I have been CFParents.

> >

> > I just filter out all the " that's so nice " posts, the

> father/husband

> > bashing, and the completey off topic post. There are several

> people who

> > normally have good questions or information to exchange, so I

pay

> attention

> > to any thread they are participating.

> >

> > I would like to be able to download all of the old Post so I

could

> use a

> > better search tool then the one provide by yahoo. But there is

> only so much

> > time in the day.

> >

> >

> >

> >

> >

> > _____

> >

> > From: [mailto:vze238yx@v...]

> > Sent: Wednesday, November 12, 2003 8:18 AM

> > To: cfparents

> > Subject: Summary of Board

> >

> > As I mentioned before, I am a new member here. I have started

> going

> > through the messages since beginning 2002 and noticed that some

> > posts are quite informative while others no so much.

> >

> > I have a recommendation to make.

> >

> > To create another message board just to put in/transfer the very

> > informative posts. This will significantly facilitate the

> exchange

> > of info between us. It will help newbies and getting the most

> > important knowledge quickly and will help current members in not

> > having to keep responding to the same questions over and over.

> >

> > This advice is not coming from laziness on my part. As I

> mentioned

> > before, I am the founder and manager of a tropical fish club

with

> > over 1,700 members and have done that for my members. The main

> club

> > is called Betta Splendens and I also created several

> > other " satellite " clubs names Betta Genetic Archives, Betta

> > Breeding, Betta Illnesses, Betta Inventions, Betta Feeding,

among

> > others.

> >

> > I thought of starting my own Back Up CF club for private use

only,

> > but am thinking that this club could benefit from such a site.

> The

> > purpose of the club is not chat but just to transfer the

> informative

> > posts. The one I created is

> > http://health.groups.yahoo.com/group/cfbackup/

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

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Hi,

it's always appreciated when people make suggestions to improve the list. I

have absolutely reached the limit for time spent at the computer, but have a

long wish list for things I would like to see improved.

1.) The Yahoo search engine is very poor. So if there is the possibility to

link all posts (or only the informative ones if you think you have the

perfect judgement) to a better search engine, that would be great. I think

sharktank has done that with their list but I don't know how they did it.

2.) I have deactivated the links section because spammers post their links

to porn sites there, I can't figure out how I can moderate those posted

links and I don't have the time to check the links section several times a

day.

3.)For similar reasons has deactivated the Calendar function

because it was misused all the time.

4.) There are lists where you are not allowed to post off-topic messages and

there are constant debates about what is off-topic and what not. CFparents

is the biggest and fastest growing CF list, therefore I assume that there is

demand for this type of list. It is a lifeline for many and sometimes the

off-topic banter is as important for us as the information is for our kids.

5.) Cystic-L (www.cystic-L.org) has the best search engine and it is

recommended to subscribe to that list to have access to their archive. But

since research is moving on fast be careful with old messages. The content

may be outdated.

Peace

Torsten, dad of Fiona 6wcf and Sebastian 6months wocf

e-mail: torstenkrafft@...

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YES, it is most likely the biggest & most updated reference /link list

there is . Norma has CF herself & does soooooo much for us all!!

LOVE & HUGS, GRDMBEV

Summary of Board

> >

> > As I mentioned before, I am a new member here. I have started

> going

> > through the messages since beginning 2002 and noticed that some

> > posts are quite informative while others no so much.

> >

> > I have a recommendation to make.

> >

> > To create another message board just to put in/transfer the very

> > informative posts. This will significantly facilitate the

> exchange

> > of info between us. It will help newbies and getting the most

> > important knowledge quickly and will help current members in not

> > having to keep responding to the same questions over and over.

> >

> > This advice is not coming from laziness on my part. As I

> mentioned

> > before, I am the founder and manager of a tropical fish club

with

> > over 1,700 members and have done that for my members. The main

> club

> > is called Betta Splendens and I also created several

> > other " satellite " clubs names Betta Genetic Archives, Betta

> > Breeding, Betta Illnesses, Betta Inventions, Betta Feeding,

among

> > others.

> >

> > I thought of starting my own Back Up CF club for private use

only,

> > but am thinking that this club could benefit from such a site.

> The

> > purpose of the club is not chat but just to transfer the

> informative

> > posts. The one I created is

> > http://health.groups.yahoo.com/group/cfbackup/

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

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