Cub Scout's lobbying engages Congressman in spreading awareness of psoriasis
Representative Todd Platts visits New Freedom, PA to support a young constituent stricken with the chronic skin disease
New Freedom, Penn. (April 28, 2008)—When most people think of a lobbyist, they don't think of a 9 year old. But Cub Scout Nicholas Stem of New Freedom has already traveled to Washington, D.C. twice to ask Congress for help. He found that help and support from Representative Todd Platts of Pennsylvania's 19th district.
Nicholas suffers from psoriasis and psoriatic arthritis. At age 7, he became one of the approximately 320,000 Pennsylvanians diagnosed with these chronic, debilitating conditions affecting the skin and joints. At times, Nick's knees hurt so much that he had to be carried most of the way during family outings and up flights of stairs. Red, itchy lesions covered his body, making it difficult to concentrate on school work. By age 8, Nicholas had tried more than 10 different medications for his conditions.
In early 2007, Nicholas and his mom Athena first traveled to Washington, D.C. to take part in the National Psoriasis Foundation's Capitol Hill Day. The young advocate made an impression on Representative Platts. Along with Senator Bob Casey (D-PA), Congressman Platts agreed to co-sponsor the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act (H.R. 1188/S. 1459), the first-ever comprehensive legislation addressing psoriasis.
This past March, Nicholas and Athena returned to Capitol Hill. With Rep. Platts already co-sponsoring H.R. 1188, they hoped he could help with another goal—raising awareness about psoriasis. Teased about the way his skin looked, Nicholas knew he needed help to spread the message that psoriasis "is itchy, but you can't catch it."
On April 25, the Congressman renewed his pledge of support to Nicholas and the psoriasis community and came to speak at Nicholas' Boy Scout Pack meeting.
"Psoriasis is a serious, lifelong disease that affects about 7.5 million Americans," said Congressman Platts. "This legislation expands psoriasis research and data collection in the hopes that we can give those afflicted by the disease better treatment options that allow them to live fuller and happier lives. Nicholas and Athena's perseverance brought this issue to my attention and I applaud them for their courage and advocacy."
"I was really excited to meet Rep. Platts, to thank him and shake his hand," reports Nicholas. "Everyone had the chance to see what psoriasis is and to learn more about it."
"We could think of psoriasis as a burden to our family or embrace it. I wanted Nicholas to feel hope," said Nick's mom, Athena Stem. "With the help of the National Psoriasis Foundation, we realized we could make a difference."
Taking steps to find a cure
The National Psoriasis Foundation strives to increase the government's investment in research towards a cure, educate decision-makers about psoriasis and psoriatic arthritis and improve access to effective treatments. Thanks to the introduction of the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act (H.R. 1188/S. 1459) in early 2007, Congress now has the chance to make a difference for the millions of Americans with these diseases. With the help of advocates like Nicholas, the Psoriasis Foundation is fighting to ensure this critical legislation receives the attention it deserves and is passed by Congress.
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About Psoriasis
Psoriasis is a noncontagious, genetic disease that results when faulty signals in the immune system prompt skin cells to regenerate too quickly, causing red, scaly lesions that can crack and bleed. It often affects the elbows, knees, scalp and torso but can appear anywhere on the body. As many as 7.5 million Americans have psoriasis, according to the National Institutes of Health. Ten percent to 30 percent of people with psoriasis also develop psoriatic arthritis, an inflammatory disease which causes pain, stiffness and swelling in and around the joints. Psoriasis can affect anyone at any age, including children. There is no cure yet for this lifelong disease.
About the National Psoriasis Foundation
The National Psoriasis Foundation is the leading patient-driven, nonprofit organization dedicated to improving the quality of life for millions of Americans with psoriasis and/or psoriatic arthritis, and their families. We focus on education, advocacy and research toward better treatments and a cure. For more information, please call the Psoriasis Foundation, headquartered in Portland, Ore., at 800.723.9166, or visit www.psoriasis.org.
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