SPEAK OUT AND HELP YOURSELF

[winter]

Now is the time for all of us to take pen and paper or email in hand and write to our senators and representatives in Washington D.C. to tell them what it is like to have psoriasis or psoriatic arthritis. Ther is a meeting on May 16-17 in Washington withour Senators and Representatives.

Write your letters now and tell them what it is like to have this disorder. The lack of quality of life because we have to spend so much time and money treating it; the indifference, rejection and discrimination that we have suffered; just what it is like to try and hide it from everyone; and the inability to get insurance coverage for necessary treatments.

If you do this now, you can flood them with the evidence they need to understand our problems. Hopefully, this will make it possible to get better funding for research and treatment of P.

If you have a support group, join it or else form one.

Help yourself. gc

[jshearer]

"Be the change you want to see in the world" -Gandhi

Great comments GC. I really want to encourage everyone who can to participate in the National Psoriasis Foundation's first Capitol Hill Day. http://www.psoriasis.org/resources/advocacy/capitol_hill_day.php

I know there's a lot of passion and a lot of sharing that goes on in these message boards, and our Capitol Hill Day would be a great success if we could capture some of it.

All of you have powerful experiences to share, and I hope you'll consider joining us in DC. We're just trying to provide a little organization so all of you can make your voices heard more effectively.

If you can't make it to Capitol Hill, we still need your help. I'll be putting up tips on the Advocacy section of the Web site soon that explain how you can make a difference from your home or in your own community. It will include some guidelines on how to most effectively communicate with your elected officials. Please keep checking the site! If you want more information, or have any questions or concerns, please don't hesitate to contact me at jshearer@psoriasis.org.

Thanks!
Joey Shearer
Advocacy Coordinator

Thank you both. Will write and will check the Advocacy site. Thanks for reminding us and cheering us on.

[jshearer]

Sorry, forgot to include the URL for the Advocacy pages:

http://www.psoriasis.org/resources/advocacy/

Thanks!
Joey Shearer
Advocacy Coordinator
National Psoriasis Foundation

[tphillips]

Here is a link to a web site that will allow you to look up your state politicians and send them an email. Maybe it will help

http://www.visi.com/juan/congress/cgi-bin/mailform2.cgi?site=ctc

[jshearer]

Here are the two "official" sites where you can find your elected officials on the national level, as well as other info about what's happening in Congress.

House of Representatives: http://www.house.gov/

Senate: http://www.senate.gov/

I'll give you guys a preview of what should be going up on the Foundation Web site soon...

Tips For Writing Congress:

1. Address your letters to "The Honorable _______," and begin the letter "Dear Senator" or "Dear Representative." If writing to a Committee Chairman or Speaker of the House, address him as "Mr. Chairman" or "Mr. Speaker."

2. Be Brief, Specific, & Always Be Courteous! Letters shouldn’t exceed one page, and the purpose of your letter should be stated clearly in the first paragraph. If your letter pertains to specific legislation, identify it accordingly (use the bill number, if known, and the title of the bill and/or a brief description). Include a brief description of who you are and your relationship to psoriasis. To make sure your letter is as productive as possible, always be courteous, even if you disagree with your representative’s position! Never threaten or use abusive language. This only hurts your cause.

3. Ask Them To Write Back. Make sure you include your address and always ask for a response to your letter. You’ll want a hard copy of your legislators’ positions on these issues for future reference and to document their positions. Please send copies of any responses you receive to the National Psoriasis Foundation.

Regards,

Joey Shearer
Advocacy Coordinator
National Psoriasis Foundation

[tphillips]

I think that the link I provided is not working now. Try this one:

http://www.visi.com/juan/congress/

[YurOthaMotha]

jshearer

you rock!! i'm sharing and passing it onto the folks at another website friendly message board:

http://www.psoriasissupport.com/pso/application

:D

[jshearer]

We have updated Capitol Hill Day info and schedule up on the Web site: http://www.psoriasis.org/resources/...ol_hill_day.php It just went live 5 minutes ago.

Check it out, download the registration form, and mail/fax it in to me! It's going to be a great opportunity to send a message to Congress, and the more people that come, the stronger that message becomes.

Feel free to email me any questions: advocacy@psoriasis.org

Thanks!
Joey

[ouchyk]

Bumping this most important thread up! Thanks to all of you who are making the trip to DC and for those of us who cannot make it, please write today!

Karen :)

[debber_1]

GREAT Idea!

BUMP!~