May 2008

Dear Advocacy Volunteers,

The arrival of spring sees flowers and greenery bursting from the ground, and our own grassroots involvement is budding at an impressive rate. We have seen Psoriasis Action Network members across the country take action in unexpected ways, and this month's edition is dedicated to two of their stories.

Cub Scout's lobbying engages Congressman in spreading awareness of psoriasis

Nicholas Stem and Rep. Todd Platts (R-Pa.-19th)

When most people think of a lobbyist, they don't think of a 9-year-old. But Cub Scout Nicholas Stem, who has both psoriasis and psoriatic arthritis, has already traveled to Washington, D.C.—twice. Nicholas has participated in Capitol Hill Day to ask members of Congress to support the psoriasis community. After this year's trip, he invited his congressman, Rep. Todd Platts (R-Pa.-19th), a co-sponsor of the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act (H.R. 1188/S. 1459) to take part in the Fair Shake for Psoriasis campaign.

On April 25, in front of 50 Cub Scouts and their families, the Congressman renewed his pledge of support to Nicholas and the psoriasis community at Nicholas's Cub Scout Pack meeting. To learn more about Nicholas's visit with Rep. Platts, visit http://www.psoriasis.org/news/press/2008/080428_cub_scout.php.

Psoriasis story makes it to National Health Council news conference

Sean Burr of Pennsylvania recently had the chance to share his story

In the months leading up to the presidential election, the National Health Council, an umbrella organization for health advocacy groups, is sponsoring town hall meetings and news conferences to draw attention to the struggles experienced by people with a disability or chronic disease in accessing care.

As a member organization of the National Health Council, the National Psoriasis Foundation facilitated a presentation by Psoriasis Action Network member Sean Burr, who shared his story at a news conference in Pittsburgh, Pa. on April 17. Disabled by psoriatic arthritis, Sean's quality of life has improved remarkably since starting treatment. Though he has no insurance, Sean has been able to benefit from an assistance program that provides the medication he needs. He can work once again, but as he has regained some normalcy in his life, he faces another difficult decision—whether to obtain insurance that will necessitate a high co-pay in order to receive the medication that has been working for him. To see Sean share his story, visit http://www.psoriasis.org/advocacy/news/video01.php.

If these stories echo any of your experiences, you can get in on the action, too!

Join our Fair Shake for Psoriasis campaign. Meet with your members of Congress at home to talk about how we can work together to combat misconceptions about psoriasis and psoriatic arthritis, and what we can do to find a cure. We're here to help you at every step along the way. To learn more, visit http://www.psoriasis.org/advocacy/fairshake/.

LATEST NEWS: Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act (H.R. 1188/S. 1459)

The list of co-sponsors for this critical legislation continues to grow thanks to the efforts of Psoriasis Action Network members throughout the country. The month of May saw the addition of two new names to the Senate list of co-sponsors—Sen. Dianne Feinstein (D-Calif.) and Sen. John Kerry (D-Mass.).

Psoriasis Action Network members have also been busy asking their members of Congress to give a Fair Shake to psoriasis. See the latest additions to our photo gallery http://www.psoriasis.org/advocacy/fairshake/photos/.

Capitol Hill Day 2009—Save the date!

It's never too early to start planning for our annual trip to Washington, D.C. Capitol Hill Day 2009 will be held Sunday, Feb. 22, and Monday, Feb. 23! Stay tuned for additional details.

Good news at the National Psoriasis Foundation

Those of you who have worked with Alyssa Brown have experienced her diligence and passion for the cause. In recognition of her tireless efforts and her successes in recruiting and cultivating volunteer advocates across the country, Alyssa has been promoted to Advocacy Outreach Manager. Please join me in congratulating Alyssa for her well-deserved advancement here at the Foundation!

As always, Alyssa is available at abrown@psoriasis.org or 800.723.9166, ext. 407 to coach and assist on how to advocate for a cure for psoriasis!

Best regards,

Sheila Rittenberg
Senior Director of Advocacy & External Affairs