Scleroderma Advocates Take Innovative Approach to Awareness
National Congressional Call-in Day Wednesday, Feb. 8
DANVERS, Mass., Feb. 3, 2012 /PRNewswire-USNewswire/ — The Scleroderma Foundation unveiled a unique awareness campaign today with the help of OrgSpring, an online technology firm that helps nonprofit organizations build and maintain relationships with supporters. Through the campaign, people living with scleroderma, their family members, friends and others are urged to change their Facebook Profile Timeline cover images in support of the Foundation’s National Congressional Call-in Day on Wednesday, Feb. 8.
“In the past, we have lobbied Congress with phone calls, visits and emails,” said Brian Ross Adams, executive director of the Foundation’s Southern California Chapter, and chair of the Advocacy Committee. “We wanted to mobilize our supporters in the virtual space and create a real buzz about this proposed legislation and the potential research that could be funded. With a simple click of a mouse, you could help find the cure for this relatively unknown and devastating disease.”
OrgSpring created a landing page (http://orgspring.com/scleroderma/) for people to download their choice of three images to use on Facebook. There also is a simple photo for people who have not yet converted to the new Timeline feature on the social networking site. OrgSpring offers tutorial videos and step-by-step instructions to show individuals how to change their profile pages.
Along with asking supporters to change their Facebook profile images, the Foundation will host a live chat on its advocacy page (www.facebook.com/scleroderma.advocacy) at 2 p.m. Eastern Monday, Feb. 6. Brian Ross Adams will answer questions about the “Scleroderma Research and Awareness Act” and how people can take part in Wednesday’s call-in day. Also, a live chat will be held on Twitter at 2 p.m. Eastern on Wednesday, Feb. 8. Simply follow @call4cure. Supporters can use the hashtag #call4cure to share their personal stories about the disease and their experience contacting legislators.
A team of scleroderma advocates also will be on the ground in Washington on Wednesday. These supporters will meet with legislators and hand-deliver thousands of petitions, which ask leaders to cosponsor the two bills that make up the “Scleroderma Research and Awareness Act:” H.R. 1672, introduced in the House by Rep. Lois Capps (D-CA) and Rep. Lee Terry (R-NE); and S. 649, introduced in the Senate by Sen. Kirsten Gillibrand of New York. Other supporters are asked to call or email their Congressional representatives to urge them to support legislation that would increase funding for scleroderma research and awareness campaigns.
For more information about scleroderma and the Scleroderma Foundation’s National Congressional Call-in Day, visit www.scleroderma.org.
Scleroderma is a chronic, often progressive, autoimmune disease in which the immune system attacks its own body.
Scleroderma means “hard skin.” It can cause a thickening and tightening of the skin. In some cases, it causes serious damage to internal organs including the lungs, heart, kidneys, esophagus and gastrointestinal tract. As scarring, or sclerosis, of these organs and organ systems progress, they work less effectively, and can lead to organ failure and death.
Some medications and treatments can help with certain symptoms, but there is no cure for scleroderma. The disease affects about 300,000 people across the U.S. In comparison, the same number of people are affected by multiple sclerosis.
About the Scleroderma Foundation
The Scleroderma Foundation is the national organization for people with scleroderma, their families and friends. It was formed Jan. 1, 1998, by a merger between the United Scleroderma Foundation and the Scleroderma Federation.
Today, the Scleroderma Foundation is headquartered in Danvers, Mass. It is a 501(c)(3) non-profit organization dedicated to serving the interests of people living with scleroderma. The Foundation has a network of 23 chapters and 168 support groups committed to carrying out the three-fold mission of support, education and research. The Scleroderma Foundation funds $1 million in new grants each year to find the cause and cure for scleroderma.
For more information about the Scleroderma Foundation, visit www.scleroderma.org or call (800) 722-HOPE (4673).
SOURCE Scleroderma Foundation