Why is fundraising necessary?

[Guest guest]

In our excitement of finding an online support group for our

diseases, we often forget or are unaware of what it takes for one

person, or more, to act as administrators of an online group.

When I first logged onto this site, I was totally ignorant of website

management, and wasn't aware that the usage of the website

cost money. I was just thrilled to find a site with so much

information and with other people with this disease, I thought I

was the only one. I also didn't realize when I first joined that the

length of each message added to the cost. Once that was

explained to me, I finally understood the reason why we are

asked to filter our replies, and not just hit the reply button, type

our response and send that and the whole content of the orginal

message, over and over again, as each new response was

added. There are a lot of things I didn't know. I just took it for

granted that the support group was here at PAI, available for me

anytime, at my convenience. Days that the site was unavailable

for Yahoo maintenance, I was upset, anxious to be back online

communicating with my friends, new and old.

I " ve learned a lot since those early days. I've also seen

websites come and go, as popularity, interest or administration

ceased. Or some that are still there, but don't have an active

membership and posts are scattered months apart with no

continuity, which reflects no true interest.

It's hard to find the words to explain how much this website has

meant to me in my personal struggle with pancreatitis. Karyn's

commitment to the website has been solid and dedicated, and

the success of this site is due to that dedication and the

wonderful support of it's ever increasing roster of members. The

website is educational, supportive and serves a very important

service to all of us who are cp patients, their caregivers or friends

of people with chronic pancreatitis. Yet it exists only because

Karyn, the founder, has devoted her time, energy, money and

heart into keeping it here, and for that I am forever grateful. My

communications here with others like me, or unlike me, have

brought me through some of the most difficult and traumatic

episodes of my lifetime. I could never have found this kind of

support outside of this website, or managed so well through

this disease without the compassion, encouragement and

caring that I've found here.

As the association has grown in size and reputation, so have it's

needs. Although the website message board does serve those

many supportive and educational functions that we all take for

granted, I, personally, support Karyn's venture to obtain tax-free

status and will be contributing to this endeavor as much as I can.

One little lady in Indiana can't do it all on her own. I want to see

the association grow beyond the limitations of just a message

board for cp patients, and as we all know, the only way for this to

happen is to have financial contributions that the association is

permitted to use. With a membership as large as ours, it is time

for the PAI to go forward and gain the national and international

recognition it deserves. IMHO, it is time to start thinking globally,

instead of just what's happening in my own back yard. Only by

doing so will we get our message out to others about the

severity of this disease and the need for more medical research

and study on ways to diagnose it, treat it, and perhaps, prevent or

cure it.

This message is purely unsolicited. I spent some time over the

weekend thinking though what my association with the group

has meant for me, the benefits I'd received by belonging, and

realized I'd never get anything like this elsewhere for free! If I'd

joined any kind of club, whether it was quilting, kayaking, skiing,

cooking, hunting, fishing, etc.....there would have been

membership fees involved.....just for participation. Considering

all the personal benefits I've gotten in these past two years for

FREE, I feel it's time for me to contribute back what I can so that

the association can grow and thrive. If anyone else feels the

same way, I hope you will remember to contribute.

With hope and prayers,

Heidi

Heidi H. Griffeth

Bluffton, SC

State and Regional Representative

Pancreatitis Association, International

[Guest guest]

In our excitement of finding an online support group for our

diseases, we often forget or are unaware of what it takes for one

person, or more, to act as administrators of an online group.

When I first logged onto this site, I was totally ignorant of website

management, and wasn't aware that the usage of the website

cost money. I was just thrilled to find a site with so much

information and with other people with this disease, I thought I

was the only one. I also didn't realize when I first joined that the

length of each message added to the cost. Once that was

explained to me, I finally understood the reason why we are

asked to filter our replies, and not just hit the reply button, type

our response and send that and the whole content of the orginal

message, over and over again, as each new response was

added. There are a lot of things I didn't know. I just took it for

granted that the support group was here at PAI, available for me

anytime, at my convenience. Days that the site was unavailable

for Yahoo maintenance, I was upset, anxious to be back online

communicating with my friends, new and old.

I " ve learned a lot since those early days. I've also seen

websites come and go, as popularity, interest or administration

ceased. Or some that are still there, but don't have an active

membership and posts are scattered months apart with no

continuity, which reflects no true interest.

It's hard to find the words to explain how much this website has

meant to me in my personal struggle with pancreatitis. Karyn's

commitment to the website has been solid and dedicated, and

the success of this site is due to that dedication and the

wonderful support of it's ever increasing roster of members. The

website is educational, supportive and serves a very important

service to all of us who are cp patients, their caregivers or friends

of people with chronic pancreatitis. Yet it exists only because

Karyn, the founder, has devoted her time, energy, money and

heart into keeping it here, and for that I am forever grateful. My

communications here with others like me, or unlike me, have

brought me through some of the most difficult and traumatic

episodes of my lifetime. I could never have found this kind of

support outside of this website, or managed so well through

this disease without the compassion, encouragement and

caring that I've found here.

As the association has grown in size and reputation, so have it's

needs. Although the website message board does serve those

many supportive and educational functions that we all take for

granted, I, personally, support Karyn's venture to obtain tax-free

status and will be contributing to this endeavor as much as I can.

One little lady in Indiana can't do it all on her own. I want to see

the association grow beyond the limitations of just a message

board for cp patients, and as we all know, the only way for this to

happen is to have financial contributions that the association is

permitted to use. With a membership as large as ours, it is time

for the PAI to go forward and gain the national and international

recognition it deserves. IMHO, it is time to start thinking globally,

instead of just what's happening in my own back yard. Only by

doing so will we get our message out to others about the

severity of this disease and the need for more medical research

and study on ways to diagnose it, treat it, and perhaps, prevent or

cure it.

This message is purely unsolicited. I spent some time over the

weekend thinking though what my association with the group

has meant for me, the benefits I'd received by belonging, and

realized I'd never get anything like this elsewhere for free! If I'd

joined any kind of club, whether it was quilting, kayaking, skiing,

cooking, hunting, fishing, etc.....there would have been

membership fees involved.....just for participation. Considering

all the personal benefits I've gotten in these past two years for

FREE, I feel it's time for me to contribute back what I can so that

the association can grow and thrive. If anyone else feels the

same way, I hope you will remember to contribute.

With hope and prayers,

Heidi

Heidi H. Griffeth

Bluffton, SC

State and Regional Representative

Pancreatitis Association, International