November 2007

Dear Advocacy Volunteers,

I hope you had a fruitful, satisfying and happy Thanksgiving holiday! We have been doing our own share of thankful reflecting here at the National Psoriasis Foundation. This past year has seen the first-ever comprehensive psoriasis legislation introduced in the U.S. Congress. We also signed up a national spokesperson for psoriasis—CariDee English, America's Next Top Model® 2006—who spoke out on Capitol Hill about her disease and the need for a cure. And, we launched the Psoriasis Action Network—the nationwide grassroots movement that is delivering the message to members of Congress about the need for a cure and improved access to care for people with psoriasis and psoriatic arthritis.

Some recent groundbreaking announcements about psoriasis research give us cause to further appreciate the impact of our advocacy efforts.

The Foundation for the National Institutes of Health (FNIH) announced about a year ago that six major studies of common diseases were selected as the first to undergo "whole genome analysis" by the Genetic Association Information Network (GAIN). This type of analysis is designed to identify the genetic contributions to common illnesses that affect public health.

Psoriasis was chosen as one of the six disease areas to be studied. It is the first and only skin disease to be awarded money under GAIN. Our medical and scientific advisors have told us that this investment is significant, unprecedented and much-needed. How did this occur? We believe that the National Institute of Arthritis and Musculoskeletal Skin Diseases (NIAMS) chose to advocate for psoriasis as a focus for GAIN resources and worked behind the scenes to have psoriasis rise to the top for consideration.

There were many factors going into the process leading up to this award; however, given our ongoing advocacy and communication with NIAMS-urging the agency to boost its investment in federal psoriasis research—I like to think the Psoriasis Foundation had a role in this success. In addition to our efforts on Capitol Hill, we have been building relationships at NIAMS and with other federal agencies and articulating the needs of our community. For example, this past year, NIAMS allocated one of its "Round Table" planning initiatives to psoriasis and psoriatic arthritis-another first. We nominated psoriasis researchers to participate in the Round Table event and two of our nominees were chosen and did participate. Also, NIAMS published a long-range strategic plan and we were able to provide the agency with a detailed analysis of its plan and our recommendations. Finally, last year, we analyzed 2005 NIH spending on psoriasis and provided the agency with our suggestions for the types and areas of research that NIH should be undertaking to move us closer to improved treatments and a cure.

As if that weren't enough, NIAMS announced earlier this month that it has awarded Case Western Reserve University School of Medicine and University Hospitals Case Medical Center a $6.37 million award to establish a Center of Research Translation (CORT) for psoriasis. This is one of the largest grants ever given to a medical institution in the United States for the study of psoriasis.

Dr. Cooper talks with a patient at the University Hospitals Case Medical Center.

This five-year grant will focus on applying intellectual and scientific resources to developing new therapies to provide relief to patients. With a focus on "translational research"—taking findings from the research "bench" to patient "bedside," this investment from NIH will build upon the important work already underway at the university under the leadership of Kevin Cooper, M.D., department chair of dermatology at University Hospitals Case Medical Center and professor of dermatology at the School of Medicine, and Thomas McCormick, Ph.D., co-director of the CORT.

"Our goal is to find ways to rebalance the human body's immune system and skin cells so that the psoriasis does not show up on the skin," said Dr. Cooper. "It is critically important to obtain safe and lasting remissions from this disease as psoriasis has significant impact on patient health."

This significant investment, along with the GAIN grant and other advances, represents a convergence of exciting developments in psoriasis research. Due to the steadfast advocacy of the Psoriasis Foundation and psoriasis community members like you, psoriasis is rising higher and higher on the national agenda and NIH radar.

Our job is far from over, but these advances are promising signs that government investment in psoriasis research can increase. Keep advocating with us and we can expect to see more hopeful news in the months and years to come. As a member of the Psoriasis Action Network, you are creating the movement that is making it happen! Stay with us and stay involved.

Sheila Rittenberg
Director of Advocacy

P.S. One of the best ways to engage in psoriasis advocacy in the new year is through Capitol Hill Day, March 2-3, 2008, in Washington, D.C. For more information, visit www.psoriasis.org/advocacy/chd/ or contact Alyssa Brown at abrown@psoriasis.org or 800.723.9166, ext. 407.