When I learned that the Sarcoma Alliance was looking for a volunteer to help with their online presence and community development, I knew that would be the perfect way for me to make a difference to the many families and individuals affected by sarcoma.
San Rafael, Calif. (PRWEB) December 13, 2012
"We created the page in April, and we asked our friends to 'like' it, but we've just now put it on the front page of our website so that people won't have to find it by accident," said board member Suzie Siegel of Tampa, a newspaper journalist before she was diagnosed with leiomyosarcoma. "I'll check the news every day to see if there's anything about sarcoma that would be useful to pass on."
The Alliance, founded in 1999 in Mill Valley, Calif., already has one Facebook page in which people exchange information, advice and support. Christine Witt has volunteered to become its moderator in January.
Witt, who lives in nearby San Rafael, has been president of Brush Dance, publisher of mindful and inspiring stationery items, since 2005. Previously, she served as Operations Manager at AOL, where she managed online communities for more than seven years.
"My future sister-in-law is a sarcoma survivor. I've seen first-hand the lasting impact that cancer has on families," she says. "When I learned that the Sarcoma Alliance was looking for a volunteer to help with their online presence and community development, I knew that would be the perfect way for me to make a difference to the many families and individuals affected by sarcoma."
Sarcoma is a cancer of connective tissue, including bone, muscle, cartilage, nerve and fat tissue. There are more than 50 subtypes. It can arise at any age in any part of the body.
"We are thrilled to have Christine as a volunteer. She already sets aside some of the proceeds from her holiday cards for us," says Siegel, who lives in Tampa.
The original Facebook page is very popular, she says, but news can get lost among the conversations. "I know some readers just want the facts.
"Online support groups such as ours often attract people who are newly diagnosed or have ongoing health problems. Some people can't handle the sad posts and they drift away. Our new Facebook page will let them keep up with what's going on.
"I hope people will look at our timeline because I've backdated posts to display older news that's still relevant. I also write on Twitter and our blog; we want to use different social media in hopes of reaching more people.
"The mainstream media often make mistakes when doing stories on sarcoma. What gets published in journals or by institutions doesn't always add much to our knowledge, or the writing is so technical that few patients can understand it. I hope my experience as a reporter and editor will help me choose news that's really new and put it in everyday words."
The Sarcoma Alliance provides guidance, education and support. To help people connect, it also has a discussion board and a biweekly live chat online. For more information, go to http://sarcomaalliance.org.