Question:
Eric,
I PM'd you this same request, but wasn't sure if you'd see it, as another PM I sent your way last week has gone unanswered.
Anyway...
Would it be possible to activate and display some of the vBulletin stats, such as "birthdays" and "newest members"? These are two very popular "stats" that enhance the community atmosphere found on many message boards.
Also, if you ever need help with the message boards, I'd be happy to lend a hand, as I have been a volunteer moderator of another vBulletin site for over 3 years.
I think some stats like this would be helpful to see on the forums...
EXAMPLE:
Thanks,
Bob
retorba@verizon.net :)
I think those are all good ideas. I hope someone will listen to you. I've called the NPF with a very good suggestion in the past. I guess because they didn't know me from adam, they told me that they'd call me back but never did. It wasn't a stupid suggestion. It was well thought out with the NPF and it's members in mind. But It must have gone into the circular file cause I'm not part of the click.
....but I don't think they want to hear ANYTHING from us. They simply do not respond. It's rude and smacks of a lack of caring. I mean that this is in addition to all the rest of the posts about the forum change. Now you guys report that they don't return any requests or make any response for other things as well. So why be there? What do they do? Im told that they collect lots of donations? Where is that being spent, what do they do for the memebers here? Believe me after seeing what I have and NOT SEEING what I should have in this last week I have lots of questions that I have posed to two reporters. I think this is a crying shame. A return phone call or email is NOT too much to ask for when we are supposed to be a 'group". Someone on this "NPF should give a darn enough to get back to us.
Elaine
....but I don't think they want to hear ANYTHING from us. They simply do not respond. It's rude and smacks of a lack of caring. I mean that this is in addition to all the rest of the posts about the forum change. Now you guys report that they don't return any requests or make any response for other things as well. So why be there? What do they do? Im told that they collect lots of donations? Where is that being spent, what do they do for the memebers here? Believe me after seeing what I have and NOT SEEING what I should have in this last week I have lots of questions that I have posed to two reporters. I think this is a crying shame. A return phone call or email is NOT too much to ask for when we are supposed to be a 'group". Someone on this "NPF should give a darn enough to get back to us.
Elaine
Elaine,
The NPF is a lot more than just these boards.
What do they do for the members here? For one they fight for advocacy. My insurance company ( bcbs of California) had to pick up injectables for psoriasis because of the fight that the NPF fought.
Another example of how the NPF works is CHD. Capital Hill Day is put together by the foundation so that so many of us who care to lobby have the ability to talk to our reps and make our disease count!
They also help us set up support groups in our areas and give us lists of doctors in our areas.
They help us fight for advocacy, awareness and a cure. They aren't just all about a forum....that"s probably the smallest part of the NPF.
If they are all about advocacy, then why can't they answer? You know, it really doesn't matter in the big picture if they are out there doing certain things, they really should answer the members UNDER ANY CIRCUMSTANCE. Without members (either on the forum or off) they don't have a population of people to advocate and lobby for.
In short, I realize they do 'some" other things, but to ignore the members direct emails,pleaze, and phone calls is just plain rude, and intolerable. Remember, We (Patients with P & PA) are what make up the NPF, not the other way around.
Elaine
Elaine,
The NPF is a lot more than just these boards.
What do they do for the members here? For one they fight for advocacy. My insurance company ( bcbs of California) had to pick up injectables for psoriasis because of the fight that the NPF fought.
Another example of how the NPF works is CHD. Capital Hill Day is put together by the foundation so that so many of us who care to lobby have the ability to talk to our reps and make our disease count!
They also help us set up support groups in our areas and give us lists of doctors in our areas.
They help us fight for advocacy, awareness and a cure. They aren't just all about a forum....that"s probably the smallest part of the NPF.
Alli,
It's scary to know how many people don't even know that the NPF has a website beyond these forums. The wealth of information that is behind makes arguing over these forums look rather trivial.
Alli,
It's scary to know how many people don't even know that the NPF has a website beyond these forums. The wealth of information that is behind makes arguing over these forums look rather trivial.
What’s even scarier are people who belong to an organization that they despise! Of course, if they have their way and get their message boards the way they want them, I’m sure the complaints will go out the window and the NPF will once again be an awesome organization.
So why be there? What do they do? Im told that they collect lots of donations? Where is that being spent, what do they do for the memebers here? Believe me after seeing what I have and NOT SEEING what I should have in this last week I have lots of questions that I have posed to two reporters.
Point your reporters over here:
In 2004-2005, the National Psoriasis Foundation
devoted:
• $1.8 million to patient services and public education
programs. This figure includes the cost of
managing our comprehensive Web site; hosting
the National Psoriasis Foundation® National
Conference; producing complimentary information
booklets and materials for patients;
staffing our patient education hotline; overseeing
the Foundation affiliated support group
program; publishing Psoriasis Advance magazine,
and more;
• $582,000 to professional education programs
focused on helping doctors provide the best and
most up-to-date care to their psoriasis patients.
These programs include our Chief Residents’
Meeting, educating the next generation of
dermatologists on advancements in psoriasis
treatment; phototherapy workshops for medical
professionals; the publication of Psoriasis
Forum, providing the latest information on
psoriasis to health care providers; and our medical
outreach department, working with medical
professionals to provide optimal treatment to
psoriasis patients;
• $472,000 toward research activities aimed at
understanding the causes of psoriasis and the
impact of the disease on patients. Our research
initiatives include providing scientists with
seed funding to study the genetic triggers for
psoriasis; conducting a series of patient-oriented
survey panels centered on defining the burden of
psoriasis and psoriatic arthritis on the individual;
hosting our International Psoriasis Genetics
Committee Meeting; and developing the National
Psoriasis BioBank to provide researchers
with genetic samples for psoriasis studies;
• $269,000 for advocacy efforts including organizing
Capitol Hill Day; and implementing
an action center on the Foundation Web site,
which offers individuals the tools to communicate
with their members of Congress on issues
pertaining to psoriasis research and treatment.
In all, the National Psoriasis Foundation served
nearly 1 million people last year. We think that is a
great return on our donors’ investment. Thank you
for trusting your charitable dollars with us.
You folks sure know how to hijack a thread.
:rolleyes:
:p
What’s even scarier are people who belong to an organization that they despise! Of course, if they have their way and get their message boards the way they want them, I’m sure the complaints will go out the window and the NPF will once again be an awesome organization.
Point your reporters over here:
In 2004-2005, the National Psoriasis Foundation
devoted:
• $1.8 million to patient services and public education
programs. This figure includes the cost of
managing our comprehensive Web site; hosting
the National Psoriasis Foundation® National
Conference; producing complimentary information
booklets and materials for patients;
staffing our patient education hotline; overseeing
the Foundation affiliated support group
program; publishing Psoriasis Advance magazine,
and more;
• $582,000 to professional education programs
focused on helping doctors provide the best and
most up-to-date care to their psoriasis patients.
These programs include our Chief Residents’
Meeting, educating the next generation of
dermatologists on advancements in psoriasis
treatment; phototherapy workshops for medical
professionals; the publication of Psoriasis
Forum, providing the latest information on
psoriasis to health care providers; and our medical
outreach department, working with medical
professionals to provide optimal treatment to
psoriasis patients;
• $472,000 toward research activities aimed at
understanding the causes of psoriasis and the
impact of the disease on patients. Our research
initiatives include providing scientists with
seed funding to study the genetic triggers for
psoriasis; conducting a series of patient-oriented
survey panels centered on defining the burden of
psoriasis and psoriatic arthritis on the individual;
hosting our International Psoriasis Genetics
Committee Meeting; and developing the National
Psoriasis BioBank to provide researchers
with genetic samples for psoriasis studies;
• $269,000 for advocacy efforts including organizing
Capitol Hill Day; and implementing
an action center on the Foundation Web site,
which offers individuals the tools to communicate
with their members of Congress on issues
pertaining to psoriasis research and treatment.
In all, the National Psoriasis Foundation served
nearly 1 million people last year. We think that is a
great return on our donors’ investment. Thank you
for trusting your charitable dollars with us.
Do you work for them?
Elaine
You folks sure know how to hijack a thread.
:rolleyes:
:p
Didn't mean to my freind :)
Elaine
Babysitting these boards isn't where the majority of the NPF's time and energy need be focused, I certainly agree with that. But what does it cost to have a couple extra boards on the forum? Nothing. I'm sure V-bulletin doesn't charge extra for that board. What does it cost to return a phone call to a member? Very little.
Personally, I would not choose to threaten the NPF with bad press. And I would hate to see the NPF get bad press over this matter, and I would urge Elaine or anyone else not to bring that wrath upon us. That punishment does not fit the crime.
But, I also believe that the moderators over stepped their bounds and took what was given them in good faith and made the wrong decisions for some of it's more seriously ill members, yes, that would be me. And I don't think that that is what Gail Zimmerman, would want for the people she has devoted a lifetime to helping.
I don't believe in all my heart that people truly dedicated to finding a cure and ending the suffering that accompanies this disease, want the people on these boards to suffer. But I do believe that Non-profits have their share of arrogant self-promoting individuals who would just as soon be right even if it means the loss of something truly important to this community. Integrity.
Babysitting these boards isn't where the majority of the NPF's time and energy need be focused, I certainly agree with that. But what does it cost to have a couple extra boards on the forum? Nothing. I'm sure V-bulletin doesn't charge extra for that board. What does it cost to return a phone call to a member? Very little.
Personally, I would not choose to threaten the NPF with bad press. And I would hate to see the NPF get bad press over this matter, and I would urge Elaine or anyone else not to bring that wrath upon us. That punishment does not fit the crime.
But, I also believe that the moderators over stepped their bounds and took what was given them in good faith and made the wrong decisions for some of it's more seriously ill members, yes, that would be me. And I don't think that that is what Gail Zimmerman, would want for the people she has devoted a lifetime to helping.
I don't believe in all my heart that people truly dedicated to finding a cure and ending the suffering that accompanies this disease, want the people on these boards to suffer. But I do believe that Non-profits have their share of arrogant self-promoting individuals who would just as soon be right even if it means the loss of something truly important to this community. Integrity.
But if the NPF can turn a deaf ear to it's own members it make's me skeptical about all their other work. We are all here because we suffer from this disease, we've been ignored, we've had things happen where we had no choice. We subsequently came here for help...not the mess we've ended up with. Yes the NPF does wonderful work, but again....we count too..after all without us..they'd have no one to lobby or research for. We count, and until they show me or any of us that we count, I will continue to do what I have to do to expose this. It in no way means that I have lack respect at all for the NPF and all it's other good works, I do respect them for it, I just cannot respect the way they are treating us right now, and that has to be brought public. They chose this path by ignoring us, we didn't. We are here, we count.
Elaine
We do count and I would like to remind everyone that most of us donate money. I have donated long before the internet.
Personally, I would not choose to threaten the NPF with bad press. And I would hate to see the NPF get bad press over this matter, and I would urge Elaine or anyone else not to bring that wrath upon us. That punishment does not fit the crime.
I agree with the 100%. The truth is that I doubt the NPF is fazed by such a threat. I think an article that headlines "Non-Profit refuses to change message board" would be the laughing stock of journalism.
We do count and I would like to remind everyone that most of us donate money. I have donated long before the internet.
Would you really stop giving money to an organization that gives $1.8 million to patient services and public education programs, $582,000 to professional education programs, $472,000 toward research activities and $269,000 for advocacy efforts yearly becuase the message board they provide is not exactly how you want it?
My concern is - Could all this anger cause NPF to discontinue the boards all together. I relented & gave up from knocking my head against a brick wall on the other threads because I was hoping they would die. Now Elaine is talking about getting the media involved & I am afraid that could cause NPF kill the boards off entirely. I feel that would be horrifically tragic & yet totally understandable. We need them to focus their attentions on the latest research developments and obtaining donations. Squabbles on the boards should not exist (& I am not only saying this one time, but all the attacks that have happend in the past as well).
I mean come on people, we talk about our age & yet - are we really acting it? Is this how we would handle a disagreement with our boss or co-worker?
My famous saying at my last job (because there was a lot of complaining regarding our newbies and the fact we sold "we pay OT" as part of the comp package only to find out after the fact - our practice did not participate with this corporate standard for profit reasons) was Treat people like a professional & they will act like one Maybe you don't feel like you were treated like one on the front end, but are you giving them any reason to treat you like one now?
If you are - fine keep up what you are doing & I will go back to being silently saddened.
Would you really stop giving money to an organization that gives $1.8 million to patient services and public education programs, $582,000 to professional education programs, $472,000 toward research activities and $269,000 for advocacy efforts yearly becuase the message board they provide is not exactly how you want it?
The forum IS for us,,,it should be user friendly. It is nothing but annoying now. I was coming here for emotional support from people like me.
All the money, research and Advocacy has not done anything for me,,,,nothing!
Back in the 80's I was denied a wheelchair because our insurance said that psoriasis was not disabling. I contacted the NPF,,,,,,nothing, no help.
Granny,
Please do not hold today's organization liable for sins of the past. With the internet today and technology of today, while yes they should have responded to you - I don't believe they were in the position to influence major medical insurance decisions like they can today. I know when I was a college student & first found out about NPF it was in the mid-90's & parental units (who have never spared expense in getting me treatment) felt like it was a waste of money. I have since found them to be VERY wrong, but it took time for NPF, as well as, myself to evolve to where we are today.
NPF's team fights for us everyday, and I am really sorry to see how we have treated them. People complain of sending multiple emails & receiving NO RESPONSE! I say the public post, that no one liked mind you, was a response. Did it address everyone's specific issues denoted in each email? No, I will admit that - but the time it would take to respond to each & every email is not where I want them to focus their time & energy. Yes read each one, summarize major issues & respond with a public post - which they did.
If you had to choose - spending time responding to emails regarding our boards OR spending time fighting (like they did in Cali) to get us more recognized & known.... Which would you choose? What really is the priority here?
I agree with the 100%. The truth is that I doubt the NPF is fazed by such a threat. I think an article that headlines "Non-Profit refuses to change message board" would be the laughing stock of journalism.
Nope, you got it all backwards..... the HEADLINE would be the following:
Non Profit Association, NPF denies essential services to it own members and investors, and ignores the needs of affected members.
Here's how the article would look:
NPF founded to advocate for afflicted people with Psoriasis and Psoriatic arthritis has recently made changes to a patient forum message board without consulting it's members. The members, many of whom donate thousands of dollars each year have demanded a valid reason for these changes, and have been ignored. Many suspect that the changes have occurred because of corporate investors and their demands on the non profit group, especially because the members did not complain or have difficulty with the original version of the message board. Many of the members, most with severe forms of the disease state that they were garnering great relief, making solid bonds with fellow sufferers, and beginning to look at life anewed until the NPF changed the format of a group which had become a lifeline for them because many were confined to their homes with no outside form of communication other than the forum. They state that despite their repeated requests via email, telephone and postings, the NPF has thus far totally ignored them.
The NPF has denied all requests for a statement to date. It should be noted to that the NPF collects millions of dollars annually for projects such as advocacy and research of the disease. Many members are angered, perplexed, confused, and disheartened, and may not return or contribute to the fund any further. Moreover, many are questioning just how a group such as the NPF could ignore them when they are the very people this group is supposed to advocate for. This has caused quite a stir in the community and other non profit organizations have kept a close watch on the situation and have contacted many of the forums members to contribute to their own cause."
Nope, you got it all backwards..... the HEADLINE would be the following:
Non Profit Association, NPF denies essential services to it own members and investors, and ignores the needs of affected members.
Here's how the article would look:
NPF founded to advocate for afflicted people with Psoriasis and Psoriatic arthritis has recently made changes to a patient forum message board without consulting it's members. The members, many of whom donate thousands of dollars each year have demanded a valid reason for these changes, and have been ignored. Many suspect that the changes have occurred because of corporate investors and their demands on the non profit group, especially because the members did not complain or have difficulty with the original version of the message board. Many of the members, most with severe forms of the disease state that they were garnering great relief, making solid bonds with fellow sufferers, and beginning to look at life anewed until the NPF changed the format of a group which had become a lifeline for them because many were confined to their homes with no outside form of communication other than the forum. They state that despite their repeated requests via email, telephone and postings, the NPF has thus far totally ignored them.
The NPF has denied all requests for a statement to date. It should be noted to that the NPF collects millions of dollars annually for projects such as advocacy and research of the disease. Many members are angered, perplexed, confused, and disheartened, and may not return or contribute to the fund any further. Moreover, many are questioning just how a group such as the NPF could ignore them when they are the very people this group is supposed to advocate for. This has caused quite a stir in the community and other non profit organizations have kept a close watch on the situation and have contacted many of the forums members to contribute to their own cause."
Definitions of Slander and libel :
In English and American law, and systems based on them, libel and slander are two forms of defamation (or defamation of character), which is the tort or delict of making a false statement of fact that injures someone's reputation. "Defamation" is however the generally-used term internationally, and is accordingly used in this article where it is not necessary to distinguish between "libel" and "slander".
Most reporters will be familiar with these terms.
Nope, you got it all backwards..... the HEADLINE would be the following:
Non Profit Association, NPF denies essential services to it own members and investors, and ignores the needs of affected members.
Here's how the article would look:
...Many suspect that the changes have occurred because of corporate investors and their demands on the non profit group...
Again, the article would make it to "The Onion" at best because it lacks journalistic integrity. The whole claim is based on what some conspiracy
theorists are making up in their heads.
Steve is right, it's defamation.
Again, the article would make it to "The Onion" at best because it lacks journalistic integrity. The whole claim is based on what some conspiracy
theorists are making up in their heads.
Steve is right, it's defamation.
And you sure are entitled. Just like we all are, we each have an opinion. You say Onion I say top headline. I don't agree that it's a "conspiracy theory" though because the proof is in the pudding.....no one has yet addressed us have they? The board still lacks what you call integrity doesn't it? The minority of people who like the board continues to get smaller while the people voicing their opinions gets larger, doesn't it?
Chaim, Im sorry you feel the way you do, but I agree that you are entitled to think and feel any way you want to, but keep in mind, so am I. We just disagree, so we will have to AGREE to disagree. I chose to do that gracefully.
Elaine
Definitions of Slander and libel :
In English and American law, and systems based on them, libel and slander are two forms of defamation (or defamation of character), which is the tort or delict of making a false statement of fact that injures someone's reputation. "Defamation" is however the generally-used term internationally, and is accordingly used in this article where it is not necessary to distinguish between "libel" and "slander".
Most reporters will be familiar with these terms.
"The truth is a good defense to any slander".
It's true that they changed theboards without consulting the members.
It's true that they have corporate interests on hand.
It's true that they are ignoring us....
It's true that we are the very people they supposedly advocate for....
It's true that we all donate money....it's true that our needs are not being met....shall I continue?
Elaine
Those definitions of libel, slander and defamation do not in anyway entail what really happens in those types of cases. People are entitled to give opinions. Also, a defense to these suits is having a reasonable basis for your beliefs. Additionally, the burden of proof on public figures to prove libel, slander and/or defamation is extremely high. They are difficult to prove and win. I'm giving no opinion on what the proposed article says. I'm simply stating that those proceedings are not as cut and dry as the definition presented above. They are actually quite complicated.
I PM'd you this same request, but wasn't sure if you'd see it, as another PM I sent your way last week has gone unanswered.
Anyway...
Would it be possible to activate and display some of the vBulletin stats, such as "birthdays" and "newest members"? These are two very popular "stats" that enhance the community atmosphere found on many message boards.
Also, if you ever need help with the message boards, I'd be happy to lend a hand, as I have been a volunteer moderator of another vBulletin site for over 3 years.
I think some stats like this would be helpful to see on the forums...
EXAMPLE:
Thanks,
Bob
retorba@verizon.net :)
Answers:
I think those are all good ideas. I hope someone will listen to you. I've called the NPF with a very good suggestion in the past. I guess because they didn't know me from adam, they told me that they'd call me back but never did. It wasn't a stupid suggestion. It was well thought out with the NPF and it's members in mind. But It must have gone into the circular file cause I'm not part of the click.
Answers:
....but I don't think they want to hear ANYTHING from us. They simply do not respond. It's rude and smacks of a lack of caring. I mean that this is in addition to all the rest of the posts about the forum change. Now you guys report that they don't return any requests or make any response for other things as well. So why be there? What do they do? Im told that they collect lots of donations? Where is that being spent, what do they do for the memebers here? Believe me after seeing what I have and NOT SEEING what I should have in this last week I have lots of questions that I have posed to two reporters. I think this is a crying shame. A return phone call or email is NOT too much to ask for when we are supposed to be a 'group". Someone on this "NPF should give a darn enough to get back to us.
Elaine
Answers:
....but I don't think they want to hear ANYTHING from us. They simply do not respond. It's rude and smacks of a lack of caring. I mean that this is in addition to all the rest of the posts about the forum change. Now you guys report that they don't return any requests or make any response for other things as well. So why be there? What do they do? Im told that they collect lots of donations? Where is that being spent, what do they do for the memebers here? Believe me after seeing what I have and NOT SEEING what I should have in this last week I have lots of questions that I have posed to two reporters. I think this is a crying shame. A return phone call or email is NOT too much to ask for when we are supposed to be a 'group". Someone on this "NPF should give a darn enough to get back to us.
Elaine
Elaine,
The NPF is a lot more than just these boards.
What do they do for the members here? For one they fight for advocacy. My insurance company ( bcbs of California) had to pick up injectables for psoriasis because of the fight that the NPF fought.
Another example of how the NPF works is CHD. Capital Hill Day is put together by the foundation so that so many of us who care to lobby have the ability to talk to our reps and make our disease count!
They also help us set up support groups in our areas and give us lists of doctors in our areas.
They help us fight for advocacy, awareness and a cure. They aren't just all about a forum....that"s probably the smallest part of the NPF.
Answers:
If they are all about advocacy, then why can't they answer? You know, it really doesn't matter in the big picture if they are out there doing certain things, they really should answer the members UNDER ANY CIRCUMSTANCE. Without members (either on the forum or off) they don't have a population of people to advocate and lobby for.
In short, I realize they do 'some" other things, but to ignore the members direct emails,pleaze, and phone calls is just plain rude, and intolerable. Remember, We (Patients with P & PA) are what make up the NPF, not the other way around.
Elaine
Answers:
Elaine,
The NPF is a lot more than just these boards.
What do they do for the members here? For one they fight for advocacy. My insurance company ( bcbs of California) had to pick up injectables for psoriasis because of the fight that the NPF fought.
Another example of how the NPF works is CHD. Capital Hill Day is put together by the foundation so that so many of us who care to lobby have the ability to talk to our reps and make our disease count!
They also help us set up support groups in our areas and give us lists of doctors in our areas.
They help us fight for advocacy, awareness and a cure. They aren't just all about a forum....that"s probably the smallest part of the NPF.
Alli,
It's scary to know how many people don't even know that the NPF has a website beyond these forums. The wealth of information that is behind makes arguing over these forums look rather trivial.
Answers:
Alli,
It's scary to know how many people don't even know that the NPF has a website beyond these forums. The wealth of information that is behind makes arguing over these forums look rather trivial.
What’s even scarier are people who belong to an organization that they despise! Of course, if they have their way and get their message boards the way they want them, I’m sure the complaints will go out the window and the NPF will once again be an awesome organization.
So why be there? What do they do? Im told that they collect lots of donations? Where is that being spent, what do they do for the memebers here? Believe me after seeing what I have and NOT SEEING what I should have in this last week I have lots of questions that I have posed to two reporters.
Point your reporters over here:
In 2004-2005, the National Psoriasis Foundation
devoted:
• $1.8 million to patient services and public education
programs. This figure includes the cost of
managing our comprehensive Web site; hosting
the National Psoriasis Foundation® National
Conference; producing complimentary information
booklets and materials for patients;
staffing our patient education hotline; overseeing
the Foundation affiliated support group
program; publishing Psoriasis Advance magazine,
and more;
• $582,000 to professional education programs
focused on helping doctors provide the best and
most up-to-date care to their psoriasis patients.
These programs include our Chief Residents’
Meeting, educating the next generation of
dermatologists on advancements in psoriasis
treatment; phototherapy workshops for medical
professionals; the publication of Psoriasis
Forum, providing the latest information on
psoriasis to health care providers; and our medical
outreach department, working with medical
professionals to provide optimal treatment to
psoriasis patients;
• $472,000 toward research activities aimed at
understanding the causes of psoriasis and the
impact of the disease on patients. Our research
initiatives include providing scientists with
seed funding to study the genetic triggers for
psoriasis; conducting a series of patient-oriented
survey panels centered on defining the burden of
psoriasis and psoriatic arthritis on the individual;
hosting our International Psoriasis Genetics
Committee Meeting; and developing the National
Psoriasis BioBank to provide researchers
with genetic samples for psoriasis studies;
• $269,000 for advocacy efforts including organizing
Capitol Hill Day; and implementing
an action center on the Foundation Web site,
which offers individuals the tools to communicate
with their members of Congress on issues
pertaining to psoriasis research and treatment.
In all, the National Psoriasis Foundation served
nearly 1 million people last year. We think that is a
great return on our donors’ investment. Thank you
for trusting your charitable dollars with us.
Answers:
You folks sure know how to hijack a thread.
:rolleyes:
:p
Answers:
What’s even scarier are people who belong to an organization that they despise! Of course, if they have their way and get their message boards the way they want them, I’m sure the complaints will go out the window and the NPF will once again be an awesome organization.
Point your reporters over here:
In 2004-2005, the National Psoriasis Foundation
devoted:
• $1.8 million to patient services and public education
programs. This figure includes the cost of
managing our comprehensive Web site; hosting
the National Psoriasis Foundation® National
Conference; producing complimentary information
booklets and materials for patients;
staffing our patient education hotline; overseeing
the Foundation affiliated support group
program; publishing Psoriasis Advance magazine,
and more;
• $582,000 to professional education programs
focused on helping doctors provide the best and
most up-to-date care to their psoriasis patients.
These programs include our Chief Residents’
Meeting, educating the next generation of
dermatologists on advancements in psoriasis
treatment; phototherapy workshops for medical
professionals; the publication of Psoriasis
Forum, providing the latest information on
psoriasis to health care providers; and our medical
outreach department, working with medical
professionals to provide optimal treatment to
psoriasis patients;
• $472,000 toward research activities aimed at
understanding the causes of psoriasis and the
impact of the disease on patients. Our research
initiatives include providing scientists with
seed funding to study the genetic triggers for
psoriasis; conducting a series of patient-oriented
survey panels centered on defining the burden of
psoriasis and psoriatic arthritis on the individual;
hosting our International Psoriasis Genetics
Committee Meeting; and developing the National
Psoriasis BioBank to provide researchers
with genetic samples for psoriasis studies;
• $269,000 for advocacy efforts including organizing
Capitol Hill Day; and implementing
an action center on the Foundation Web site,
which offers individuals the tools to communicate
with their members of Congress on issues
pertaining to psoriasis research and treatment.
In all, the National Psoriasis Foundation served
nearly 1 million people last year. We think that is a
great return on our donors’ investment. Thank you
for trusting your charitable dollars with us.
Do you work for them?
Elaine
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You folks sure know how to hijack a thread.
:rolleyes:
:p
Didn't mean to my freind :)
Elaine
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Babysitting these boards isn't where the majority of the NPF's time and energy need be focused, I certainly agree with that. But what does it cost to have a couple extra boards on the forum? Nothing. I'm sure V-bulletin doesn't charge extra for that board. What does it cost to return a phone call to a member? Very little.
Personally, I would not choose to threaten the NPF with bad press. And I would hate to see the NPF get bad press over this matter, and I would urge Elaine or anyone else not to bring that wrath upon us. That punishment does not fit the crime.
But, I also believe that the moderators over stepped their bounds and took what was given them in good faith and made the wrong decisions for some of it's more seriously ill members, yes, that would be me. And I don't think that that is what Gail Zimmerman, would want for the people she has devoted a lifetime to helping.
I don't believe in all my heart that people truly dedicated to finding a cure and ending the suffering that accompanies this disease, want the people on these boards to suffer. But I do believe that Non-profits have their share of arrogant self-promoting individuals who would just as soon be right even if it means the loss of something truly important to this community. Integrity.
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Babysitting these boards isn't where the majority of the NPF's time and energy need be focused, I certainly agree with that. But what does it cost to have a couple extra boards on the forum? Nothing. I'm sure V-bulletin doesn't charge extra for that board. What does it cost to return a phone call to a member? Very little.
Personally, I would not choose to threaten the NPF with bad press. And I would hate to see the NPF get bad press over this matter, and I would urge Elaine or anyone else not to bring that wrath upon us. That punishment does not fit the crime.
But, I also believe that the moderators over stepped their bounds and took what was given them in good faith and made the wrong decisions for some of it's more seriously ill members, yes, that would be me. And I don't think that that is what Gail Zimmerman, would want for the people she has devoted a lifetime to helping.
I don't believe in all my heart that people truly dedicated to finding a cure and ending the suffering that accompanies this disease, want the people on these boards to suffer. But I do believe that Non-profits have their share of arrogant self-promoting individuals who would just as soon be right even if it means the loss of something truly important to this community. Integrity.
But if the NPF can turn a deaf ear to it's own members it make's me skeptical about all their other work. We are all here because we suffer from this disease, we've been ignored, we've had things happen where we had no choice. We subsequently came here for help...not the mess we've ended up with. Yes the NPF does wonderful work, but again....we count too..after all without us..they'd have no one to lobby or research for. We count, and until they show me or any of us that we count, I will continue to do what I have to do to expose this. It in no way means that I have lack respect at all for the NPF and all it's other good works, I do respect them for it, I just cannot respect the way they are treating us right now, and that has to be brought public. They chose this path by ignoring us, we didn't. We are here, we count.
Elaine
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We do count and I would like to remind everyone that most of us donate money. I have donated long before the internet.
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Personally, I would not choose to threaten the NPF with bad press. And I would hate to see the NPF get bad press over this matter, and I would urge Elaine or anyone else not to bring that wrath upon us. That punishment does not fit the crime.
I agree with the 100%. The truth is that I doubt the NPF is fazed by such a threat. I think an article that headlines "Non-Profit refuses to change message board" would be the laughing stock of journalism.
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We do count and I would like to remind everyone that most of us donate money. I have donated long before the internet.
Would you really stop giving money to an organization that gives $1.8 million to patient services and public education programs, $582,000 to professional education programs, $472,000 toward research activities and $269,000 for advocacy efforts yearly becuase the message board they provide is not exactly how you want it?
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My concern is - Could all this anger cause NPF to discontinue the boards all together. I relented & gave up from knocking my head against a brick wall on the other threads because I was hoping they would die. Now Elaine is talking about getting the media involved & I am afraid that could cause NPF kill the boards off entirely. I feel that would be horrifically tragic & yet totally understandable. We need them to focus their attentions on the latest research developments and obtaining donations. Squabbles on the boards should not exist (& I am not only saying this one time, but all the attacks that have happend in the past as well).
I mean come on people, we talk about our age & yet - are we really acting it? Is this how we would handle a disagreement with our boss or co-worker?
My famous saying at my last job (because there was a lot of complaining regarding our newbies and the fact we sold "we pay OT" as part of the comp package only to find out after the fact - our practice did not participate with this corporate standard for profit reasons) was Treat people like a professional & they will act like one Maybe you don't feel like you were treated like one on the front end, but are you giving them any reason to treat you like one now?
If you are - fine keep up what you are doing & I will go back to being silently saddened.
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Would you really stop giving money to an organization that gives $1.8 million to patient services and public education programs, $582,000 to professional education programs, $472,000 toward research activities and $269,000 for advocacy efforts yearly becuase the message board they provide is not exactly how you want it?
The forum IS for us,,,it should be user friendly. It is nothing but annoying now. I was coming here for emotional support from people like me.
All the money, research and Advocacy has not done anything for me,,,,nothing!
Back in the 80's I was denied a wheelchair because our insurance said that psoriasis was not disabling. I contacted the NPF,,,,,,nothing, no help.
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Granny,
Please do not hold today's organization liable for sins of the past. With the internet today and technology of today, while yes they should have responded to you - I don't believe they were in the position to influence major medical insurance decisions like they can today. I know when I was a college student & first found out about NPF it was in the mid-90's & parental units (who have never spared expense in getting me treatment) felt like it was a waste of money. I have since found them to be VERY wrong, but it took time for NPF, as well as, myself to evolve to where we are today.
NPF's team fights for us everyday, and I am really sorry to see how we have treated them. People complain of sending multiple emails & receiving NO RESPONSE! I say the public post, that no one liked mind you, was a response. Did it address everyone's specific issues denoted in each email? No, I will admit that - but the time it would take to respond to each & every email is not where I want them to focus their time & energy. Yes read each one, summarize major issues & respond with a public post - which they did.
If you had to choose - spending time responding to emails regarding our boards OR spending time fighting (like they did in Cali) to get us more recognized & known.... Which would you choose? What really is the priority here?
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I agree with the 100%. The truth is that I doubt the NPF is fazed by such a threat. I think an article that headlines "Non-Profit refuses to change message board" would be the laughing stock of journalism.
Nope, you got it all backwards..... the HEADLINE would be the following:
Non Profit Association, NPF denies essential services to it own members and investors, and ignores the needs of affected members.
Here's how the article would look:
NPF founded to advocate for afflicted people with Psoriasis and Psoriatic arthritis has recently made changes to a patient forum message board without consulting it's members. The members, many of whom donate thousands of dollars each year have demanded a valid reason for these changes, and have been ignored. Many suspect that the changes have occurred because of corporate investors and their demands on the non profit group, especially because the members did not complain or have difficulty with the original version of the message board. Many of the members, most with severe forms of the disease state that they were garnering great relief, making solid bonds with fellow sufferers, and beginning to look at life anewed until the NPF changed the format of a group which had become a lifeline for them because many were confined to their homes with no outside form of communication other than the forum. They state that despite their repeated requests via email, telephone and postings, the NPF has thus far totally ignored them.
The NPF has denied all requests for a statement to date. It should be noted to that the NPF collects millions of dollars annually for projects such as advocacy and research of the disease. Many members are angered, perplexed, confused, and disheartened, and may not return or contribute to the fund any further. Moreover, many are questioning just how a group such as the NPF could ignore them when they are the very people this group is supposed to advocate for. This has caused quite a stir in the community and other non profit organizations have kept a close watch on the situation and have contacted many of the forums members to contribute to their own cause."
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Nope, you got it all backwards..... the HEADLINE would be the following:
Non Profit Association, NPF denies essential services to it own members and investors, and ignores the needs of affected members.
Here's how the article would look:
NPF founded to advocate for afflicted people with Psoriasis and Psoriatic arthritis has recently made changes to a patient forum message board without consulting it's members. The members, many of whom donate thousands of dollars each year have demanded a valid reason for these changes, and have been ignored. Many suspect that the changes have occurred because of corporate investors and their demands on the non profit group, especially because the members did not complain or have difficulty with the original version of the message board. Many of the members, most with severe forms of the disease state that they were garnering great relief, making solid bonds with fellow sufferers, and beginning to look at life anewed until the NPF changed the format of a group which had become a lifeline for them because many were confined to their homes with no outside form of communication other than the forum. They state that despite their repeated requests via email, telephone and postings, the NPF has thus far totally ignored them.
The NPF has denied all requests for a statement to date. It should be noted to that the NPF collects millions of dollars annually for projects such as advocacy and research of the disease. Many members are angered, perplexed, confused, and disheartened, and may not return or contribute to the fund any further. Moreover, many are questioning just how a group such as the NPF could ignore them when they are the very people this group is supposed to advocate for. This has caused quite a stir in the community and other non profit organizations have kept a close watch on the situation and have contacted many of the forums members to contribute to their own cause."
Definitions of Slander and libel :
In English and American law, and systems based on them, libel and slander are two forms of defamation (or defamation of character), which is the tort or delict of making a false statement of fact that injures someone's reputation. "Defamation" is however the generally-used term internationally, and is accordingly used in this article where it is not necessary to distinguish between "libel" and "slander".
Most reporters will be familiar with these terms.
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Nope, you got it all backwards..... the HEADLINE would be the following:
Non Profit Association, NPF denies essential services to it own members and investors, and ignores the needs of affected members.
Here's how the article would look:
...Many suspect that the changes have occurred because of corporate investors and their demands on the non profit group...
Again, the article would make it to "The Onion" at best because it lacks journalistic integrity. The whole claim is based on what some conspiracy
theorists are making up in their heads.
Steve is right, it's defamation.
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Again, the article would make it to "The Onion" at best because it lacks journalistic integrity. The whole claim is based on what some conspiracy
theorists are making up in their heads.
Steve is right, it's defamation.
And you sure are entitled. Just like we all are, we each have an opinion. You say Onion I say top headline. I don't agree that it's a "conspiracy theory" though because the proof is in the pudding.....no one has yet addressed us have they? The board still lacks what you call integrity doesn't it? The minority of people who like the board continues to get smaller while the people voicing their opinions gets larger, doesn't it?
Chaim, Im sorry you feel the way you do, but I agree that you are entitled to think and feel any way you want to, but keep in mind, so am I. We just disagree, so we will have to AGREE to disagree. I chose to do that gracefully.
Elaine
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Definitions of Slander and libel :
In English and American law, and systems based on them, libel and slander are two forms of defamation (or defamation of character), which is the tort or delict of making a false statement of fact that injures someone's reputation. "Defamation" is however the generally-used term internationally, and is accordingly used in this article where it is not necessary to distinguish between "libel" and "slander".
Most reporters will be familiar with these terms.
"The truth is a good defense to any slander".
It's true that they changed theboards without consulting the members.
It's true that they have corporate interests on hand.
It's true that they are ignoring us....
It's true that we are the very people they supposedly advocate for....
It's true that we all donate money....it's true that our needs are not being met....shall I continue?
Elaine
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Those definitions of libel, slander and defamation do not in anyway entail what really happens in those types of cases. People are entitled to give opinions. Also, a defense to these suits is having a reasonable basis for your beliefs. Additionally, the burden of proof on public figures to prove libel, slander and/or defamation is extremely high. They are difficult to prove and win. I'm giving no opinion on what the proposed article says. I'm simply stating that those proceedings are not as cut and dry as the definition presented above. They are actually quite complicated.
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