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Last updated on April 21, 2014 at 1:20 EDT

June is Scleroderma Awareness Month

May 31, 2011

Going Social to Spread the Word in 2011

DANVERS, Mass., May 31, 2011 /PRNewswire-USNewswire/ — June is Scleroderma Awareness Month, and you can become an advocate for the Scleroderma Foundation by raising awareness and teaching others about this chronic, connective tissue disease. This month, join our 23 chapters and more than 145 support groups, as we work to spread the word about this devastating disease.

Teaming up with the Scleroderma Foundation in 2011 to spread awareness in the Twitterverse is ambassador and actress Kellie Martin (“Christy” and “ER”). Kellie will share important facts about scleroderma and how people can get involved to help find a cure for the disease. To receive Twitter updates from Kellie, follow @Kellie_Martin.

“Through the years, Kellie has showed her continued support for scleroderma patients and their families, as well as the Foundation. We are very excited to have her online support this year,” said Robert J. Riggs, the Scleroderma Foundation CEO. “We hope we can reach a greater audience with her help as we work diligently to find the cause and cure of the disease.”

In June, Scleroderma Foundation chapters and support groups will host “Stepping Out to Cure Scleroderma” walk-a-thons across the country to raise money for research, education and support programs. There are 53 events scheduled this year. In 2010, 44 walk-a-thons were held and raised more than $1.1 million for the Foundation.

Eight teams from Actelion Pharmaceuticals US, Inc., also will take part in the Escape from Alcatraz triathlon Sunday, June 5, in San Francisco. Twenty-four athletes will swim, bike and run to spread awareness about scleroderma and pulmonary arterial hypertension (PAH), one of the secondary conditions that many scleroderma patients also have.

There are many ways to get involved during Scleroderma Awareness Month. Here’s how people can help:

  • Show your support online. Visit our Facebook page at www.facebook.com/sclerodermaUS to download an icon to use as your profile picture for the month of June on social networking sites such as Facebook and Twitter. Ask your family and friends to change their profile pictures, as well.
  • Wear some teal. Teal is the official color for scleroderma awareness. You can purchase a bracelet and other items through our website at http://bit.ly/sclerostore.
  • Share your story with others. Tell at least one other person how scleroderma has changed your life or a loved one’s life. You also can share your story with your Congressional leaders. Find the address to your elected officials online at www.congress.org.
  • Walk to find a cure. “Stepping Out to Cure Scleroderma” walk-a-thons take place all around the U.S. Find a walk near you at http://bit.ly/sclerowalk.
  • Upload your photos and video to the Scleroderma Awareness Month Flickr Pool at http://bit.ly/scleropix. Show your support by wearing your Scleroderma Foundation gear or taking part in fundraising events, and then post the photos or videos.

For more information about scleroderma and Scleroderma Awareness Month, visit www.scleroderma.org.

About Scleroderma

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 145 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


Source: newswire