October 2007

Dear Advocacy Volunteers,

Fall is an exciting time in psoriasis advocacy as we kick off the new Psoriasis Action Network. This a wonderful way to unite and organize the thousands of people who have been advocating for psoriasis online, in their communities and on Capitol Hill. You are part of this network; your participation and support are tremendous and enable us to make a difference for psoriasis! With your help, we can grow the ranks of the Psoriasis Action Network coast to coast, resulting in a nationwide movement that can't be overlooked in D.C. and around the country.

There are several ways you can help make this a reality:

1) Please forward this link, www.psoriasis.org/advocacy/action, to your friends and family so they can join the Psoriasis Action Network-we need as many people as possible to advocate for our community;

2) If you haven’t already, please complete this brief questionnaire about your volunteer interests. This will help us when we need to fill specific needs for taking action.

3) Those who complete the survey will receive a Psoriasis Action Network “window sticker.“ Proudly display your window sticker to let people know that you care about psoriasis.

We've already seen the effectiveness of the Psoriasis Action Network. Thanks to phone calls and letters from Psoriasis Action Network members this August to elected officials, at least four members of Congress have signed on to co-sponsor our bill, the Psoriasis and Psoriatic Arthritis Research, Cure and Care Act-PPARCCA- (H.R. 1188/S. 1459).

I talked about the Psoriasis Action Network on Capitol Hill two weeks ago during one of my regular visits to D.C. Congressional staff members were excited to learn that we have more than 3,700 members! We let staffers know about our upcoming March Capitol Hill Day, and they are eager to meet with our advocates and support our efforts. We checked in with the sponsors of our legislation and are encouraged and excited by these offices' commitment to our community. (We are thrilled to report that we have 51 co-sponsors for H.R. 1188 and eight for S. 1459

While in D.C., we also convened a meeting of the Psoriasis Advocacy Partners-a group of six organizations active in psoriasis or psoriatic arthritis research, care and advocacy. The National Psoriasis Foundation launched this group about a year ago to exchange information and discuss issues, opportunities and possible collaboration.

At this meeting, we heard from the Chief of the Immunodeficiency and Immunopathology Section of the National Institute of Allergy and Infectious Disease (NIAID)-one of the National Institutes of Health (NIH) institutes undertaking research relevant to psoriasis and psoriatic arthritis. Dr. Josiah Wedgwood talked to us about research directions at NIAID. I also attended a meeting of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Advisory Council. NIAMS is the primary NIH agency undertaking psoriasis research. There, I heard presentations on the revamp of the NIAMS grant peer review program (good news for researchers!) and the evaluation of the training program for researchers who receive their first NIAMS grants. NIAMS wants to make sure that these researchers have the resources and support to stay in research for the long run.

These are all great programs that are being fostered at NIH but the facts are the facts: psoriasis research is still lagging and the road to a cure is long. While we are closer than ever to our goals, we need a surge of voices to speak out to move our cause forward. With comprehensive psoriasis legislation pending in Congress, a celebrity national spokesperson and the newly formed Psoriasis Action Network, the energy and visibility coming from our community can-and will-make the difference.

I hope you will be one of the Psoriasis Action Network members to make your voice count and take action this month on behalf of psoriasis. I look forward to hearing about your advocacy efforts

Best regards,

Sheila Rittenberg
Director of Advocacy

P.S. As always, Alyssa Brown is available to work with you and respond to your questions. Just contact her at abrown@psoriasis.org.