Question:
The National Psoriasis Foundation is proud to announce our 2004 National Conference in San Diego, August 6-8.
Interested in attending?
Chat with us online next Wednesday, April 28, at 5:30 PDT (8:30 Eastern) about how this event can help you:
Did you come last year? Then please share your thoughts with others during our chat.
Read all about the conference on our Events page:
We'd love to hear your thoughts and answer your questions next week, and then see you in beautiful San Diego!
CHAT ACCESS
To access the chat, go to "Community" and then "Member Chat," at
Then, if you are not already logged in, simply log in with your username and password.
Chat offers live, real-time interaction and connection for Members of the Psoriasis Foundation. Membership is a suggested donation of $27.00, but any donation will start your membership. If you're not already a Member, become one today to join the chat!
If you have any questions, please feel free to contact the Member Services Coordinator at member@here, or call 800.723.9166 between Monday through Friday, 8:00 a.m. to 5:00 p.m. Pacific Time.
Hope to chat with you on Wednesday!
Jennifer Lind
Web Content Manager
SEE EVERYONE IN CHAT!!
tAKE CARE AND SMILE
bELLA
Hate to disagree with my dear friend Bella. This is a great idea in due time, but there should be a discussion of the upcoming Washington Day and the importance of the letter writing campagin which has been totally dropped by the NPF.
You have asked members to join you in Washington. You have requested that we make our voices heard and now NPF has gone silent on this campagin. [SIZE=3]WHY?[/SIZE]
[SIZE=4]WHERE IS THIS CAMPAIGN AND IF YOU ARE DROPPING THE BALL WHY ARE YOU LEAVING US YOUR MEMBERS OUT TO DRY?WE HAVE GONE TO GREAT PERSONAL EXPENSE, REARRANGED SCHEDULES AND MADE GREAT EFFORTS TO MAKE IT TO WAHINGTON TO RAISE OUR COLLECTIVE VOICES BUT ONLY TO FIND NPF VOICE HAS GONE SILENT? WHERE IS NPF SUPPORT?[/SIZE]
[SIZE=4]A JOB DONE HALF ASSED IS A JOB NOT DONE AT ALL!!!!![/SIZE]
Didn't the deadline pass for signing up for capital hill day?
I'm sure people can still make the arangements if they could attend, but there is no need to further advertise it.
The NPF is engaged in advocacy on a daily basis, so they are far from dropping the ball. It happens that there is one day a year that they are aranging actual Washington meetings, but it's not advocacy week or anything like that because the advocacy is ongoing.
Don't be mistaken into believing that this a once a year drive by the NPF (foolish thought to begin with). They do capital hill day once a year because most people can't take off once a month, every other month..etc to go to Washington to make appeals.
Chaim you are totally wrong. The first phase the one for registration for the actual visit to Washington is over. But I quote NPF web page , "In the weeks aproaching May16 &17 we will coorinate an organized congressional letter writing campaign". That has NOT HAPPENED. And sample letter have been removed from the web page and nothing has yet been done. That what need s to be jumped started.
Hope you wrote you letters.
I've been writing letters regarding legislation for a very long time, but I never felt the need to have people pat me on the back by advertising my efforts.
Joey Shearer is well organized and I'm sure working hard on what needs to be done. Capital Hill day is May 16th so there is plenty of time to give examples.
Besides, the chat being organized by those in charge of the conference to discuss the conference. There are seperate people at the NPF who do advocacy and I'm sure they are hard at work. Believe ir or not, the NPF can organize two things at once.
Give a little credit.
I agree that the people working on the Confrence are different from those working on the Political Adgenda. And I am not disagreeing with you that the NPF chat on the upcoming Confrence in August is important but if you read the board and it you saw the blatter about a consorted effort to have a mas letter writing campaign you will realize that the NPF has dropped the ball. Ther is no other way to say it. Wetehre its Joey or anyone else, it time to blank or get off the pot!
One of my earlier points was that this is not advocacy week or month. Not all advocacy work has to be done one the spot right now. Capital Hill day is one thing....and it has been organized, and writing letters is a seperate issue. There is no need for Capital Hill day and letter writing to coincide. Just because nothing has been updated for a week does mean that the NPF should be accused of dropping the ball. I'm 100% humbled if you shadowed Joey for a day and saw his work.
I think you have missed to the point. They most absolutly do have to conicede to maximize the full effect of Capitol Day. An army of twenty + cand do little good with out the full support and backing the the organization that is organizing the day. Our point and out voice are best augmented when we have the backing and support of our fellow members. They are ONE AND THE SAME!
Were is the lack of support? NPF organized the event and will be there with the members who can attend in one united voice. I see nothing short of a fine job being done.
First of all, a big THANKS to everyone who has taken positive action and encouraged Congress to increase research funding for psoriasis and psoriatic arthritis. I am pleasantly surprised at the amount of interest this effort has generated. Anytime you begin a grassroots movement, it takes time to create a solid foundation. Creating a network that can reach every Member of Congress can be especially difficult.
This is the first year that the National Psoriasis Foundation has organized a Capitol Hill Day, and we’ve already signed up more than 20 people willing to make time in their busy schedules to travel to Washington, DC. These 20 people, from across the country, will meet face-to-face with more than 30 congressional offices—the people that control the government purse strings. It’s important to keep in mind that these are 20 more people involved and 30 more face-to-face meetings than we had a year ago, and as we move forward these numbers will only grow larger.
Capitol Hill Day is May 16-17. On May 18 we’ll begin planning Capitol Hill Day 2005, and because of our efforts this year we’ll already have a solid foundation to stand on. We need to spread positive energy, and encourage more people to join in our efforts. If we do this, our efforts and successes will grow dramatically.
The Foundation understands that traveling to Washington, DC takes a substantial investment of time and money, but it’s a worthwhile investment for those who can make it. To encourage everyone to participate, we’ve added information on how YOU can write Congress a letter (we've included a sample) to our Web site. It’s been “live” since April 12, so if you haven’t seen it yet, please visit http://66.103.128.204/resources/adv...mple_letter.php Writing a letter to Congress is something that absolutely everyone can do, so while you’re at it, encourage two, three, or ten others to send letters too.
Thanks again, and please don’t hesitate to contact me with questions or concerns.
Sincerely,
Joey Shearer
Advocacy Coordinator
National Psoriasis Foundation
advocacy@here
How did this thread turn into an argument about Capitol Hill and Advocacy??
I think we're missing the point here!!
like chaim said- there are different parts/people of NPF tht work on advocacy and diff ones tht work on the conference... this announcement was posted by the conference people, who obviously felt the need to have a chat about it... this has NOTHING to do with advocacy... if those ppl decide to do a chat, then they'll do it!!!!
Interested in attending?
Chat with us online next Wednesday, April 28, at 5:30 PDT (8:30 Eastern) about how this event can help you:
- meet hundreds in the psoriasis and psoriatic arthritis community
- talk one-on-one with Psoriasis Foundation staff and medical leaders in the field of psoriasis
- "get on board" by taking action and getting involved with our volunteer movement
Did you come last year? Then please share your thoughts with others during our chat.
Read all about the conference on our Events page:
We'd love to hear your thoughts and answer your questions next week, and then see you in beautiful San Diego!
CHAT ACCESS
To access the chat, go to "Community" and then "Member Chat," at
Then, if you are not already logged in, simply log in with your username and password.
Chat offers live, real-time interaction and connection for Members of the Psoriasis Foundation. Membership is a suggested donation of $27.00, but any donation will start your membership. If you're not already a Member, become one today to join the chat!
If you have any questions, please feel free to contact the Member Services Coordinator at member@here, or call 800.723.9166 between Monday through Friday, 8:00 a.m. to 5:00 p.m. Pacific Time.
Hope to chat with you on Wednesday!
Jennifer Lind
Web Content Manager
Answers:
SEE EVERYONE IN CHAT!!
tAKE CARE AND SMILE
bELLA
Answers:
Hate to disagree with my dear friend Bella. This is a great idea in due time, but there should be a discussion of the upcoming Washington Day and the importance of the letter writing campagin which has been totally dropped by the NPF.
You have asked members to join you in Washington. You have requested that we make our voices heard and now NPF has gone silent on this campagin. [SIZE=3]WHY?[/SIZE]
[SIZE=4]WHERE IS THIS CAMPAIGN AND IF YOU ARE DROPPING THE BALL WHY ARE YOU LEAVING US YOUR MEMBERS OUT TO DRY?WE HAVE GONE TO GREAT PERSONAL EXPENSE, REARRANGED SCHEDULES AND MADE GREAT EFFORTS TO MAKE IT TO WAHINGTON TO RAISE OUR COLLECTIVE VOICES BUT ONLY TO FIND NPF VOICE HAS GONE SILENT? WHERE IS NPF SUPPORT?[/SIZE]
[SIZE=4]A JOB DONE HALF ASSED IS A JOB NOT DONE AT ALL!!!!![/SIZE]
Answers:
Didn't the deadline pass for signing up for capital hill day?
I'm sure people can still make the arangements if they could attend, but there is no need to further advertise it.
The NPF is engaged in advocacy on a daily basis, so they are far from dropping the ball. It happens that there is one day a year that they are aranging actual Washington meetings, but it's not advocacy week or anything like that because the advocacy is ongoing.
Don't be mistaken into believing that this a once a year drive by the NPF (foolish thought to begin with). They do capital hill day once a year because most people can't take off once a month, every other month..etc to go to Washington to make appeals.
Answers:
Chaim you are totally wrong. The first phase the one for registration for the actual visit to Washington is over. But I quote NPF web page , "In the weeks aproaching May16 &17 we will coorinate an organized congressional letter writing campaign". That has NOT HAPPENED. And sample letter have been removed from the web page and nothing has yet been done. That what need s to be jumped started.
Hope you wrote you letters.
Answers:
I've been writing letters regarding legislation for a very long time, but I never felt the need to have people pat me on the back by advertising my efforts.
Joey Shearer is well organized and I'm sure working hard on what needs to be done. Capital Hill day is May 16th so there is plenty of time to give examples.
Besides, the chat being organized by those in charge of the conference to discuss the conference. There are seperate people at the NPF who do advocacy and I'm sure they are hard at work. Believe ir or not, the NPF can organize two things at once.
Give a little credit.
Answers:
I agree that the people working on the Confrence are different from those working on the Political Adgenda. And I am not disagreeing with you that the NPF chat on the upcoming Confrence in August is important but if you read the board and it you saw the blatter about a consorted effort to have a mas letter writing campaign you will realize that the NPF has dropped the ball. Ther is no other way to say it. Wetehre its Joey or anyone else, it time to blank or get off the pot!
Answers:
One of my earlier points was that this is not advocacy week or month. Not all advocacy work has to be done one the spot right now. Capital Hill day is one thing....and it has been organized, and writing letters is a seperate issue. There is no need for Capital Hill day and letter writing to coincide. Just because nothing has been updated for a week does mean that the NPF should be accused of dropping the ball. I'm 100% humbled if you shadowed Joey for a day and saw his work.
Answers:
I think you have missed to the point. They most absolutly do have to conicede to maximize the full effect of Capitol Day. An army of twenty + cand do little good with out the full support and backing the the organization that is organizing the day. Our point and out voice are best augmented when we have the backing and support of our fellow members. They are ONE AND THE SAME!
Answers:
Were is the lack of support? NPF organized the event and will be there with the members who can attend in one united voice. I see nothing short of a fine job being done.
Answers:
First of all, a big THANKS to everyone who has taken positive action and encouraged Congress to increase research funding for psoriasis and psoriatic arthritis. I am pleasantly surprised at the amount of interest this effort has generated. Anytime you begin a grassroots movement, it takes time to create a solid foundation. Creating a network that can reach every Member of Congress can be especially difficult.
This is the first year that the National Psoriasis Foundation has organized a Capitol Hill Day, and we’ve already signed up more than 20 people willing to make time in their busy schedules to travel to Washington, DC. These 20 people, from across the country, will meet face-to-face with more than 30 congressional offices—the people that control the government purse strings. It’s important to keep in mind that these are 20 more people involved and 30 more face-to-face meetings than we had a year ago, and as we move forward these numbers will only grow larger.
Capitol Hill Day is May 16-17. On May 18 we’ll begin planning Capitol Hill Day 2005, and because of our efforts this year we’ll already have a solid foundation to stand on. We need to spread positive energy, and encourage more people to join in our efforts. If we do this, our efforts and successes will grow dramatically.
The Foundation understands that traveling to Washington, DC takes a substantial investment of time and money, but it’s a worthwhile investment for those who can make it. To encourage everyone to participate, we’ve added information on how YOU can write Congress a letter (we've included a sample) to our Web site. It’s been “live” since April 12, so if you haven’t seen it yet, please visit http://66.103.128.204/resources/adv...mple_letter.php Writing a letter to Congress is something that absolutely everyone can do, so while you’re at it, encourage two, three, or ten others to send letters too.
Thanks again, and please don’t hesitate to contact me with questions or concerns.
Sincerely,
Joey Shearer
Advocacy Coordinator
National Psoriasis Foundation
advocacy@here
Answers:
How did this thread turn into an argument about Capitol Hill and Advocacy??
I think we're missing the point here!!
like chaim said- there are different parts/people of NPF tht work on advocacy and diff ones tht work on the conference... this announcement was posted by the conference people, who obviously felt the need to have a chat about it... this has NOTHING to do with advocacy... if those ppl decide to do a chat, then they'll do it!!!!
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