If you’ve never heard of scleroderma, you’re not alone. The Scleroderma Foundation kicked off its annual Sclero-WHAT? campaign to educate the public about the autoimmune disease. Similar to lupus, rheumatoid arthritis, and multiple sclerosis, the body attacks itself by hardening tissues either on the skin or internal organs. It has no known cause or cure and often takes five to seven years to diagnose. Communications manager Christina Relacion says the campaign, which always falls in June during scleroderma awareness month, helps people living with the disease feel more connected and it helps educate the public on a disease whose symptoms are similar to other diseases.
The campaign is asking for “selfies” for the first time from people with scleroderma. They’ll get posted on social media and used for promotional posters. Christina says the scleroderma community is very social and the organization wanted to capture that. This is a departure from the past two years when people were asked to doodle the word scleroderma. (The idea was modeled after Google's occasional doodles of its search page logo.) The awareness campaign will also include walk-a-thons and a partnership with two similar organizations. Christina says what makes the awareness campaign work is involving the entire foundation in brainstorming ideas, from the accountants and IT people to the communications and marketing staff.
The Danvers, Mass.-based foundation, which has 23 chapters and 150 support groups in the US and Puerto Rico, also advocates for scleroderma research funding. Pending legislation in the House and Senate called the Scleroderma Research and Awareness Act would create the first US-wide awareness campaign and increase research dollars. The organization is also pushing for DOD scleroderma research dollars, which were $2.5M in 2012 and 2013 but were completely eliminated in the 2014 budget. Christina says there's an estimated 300,000 people in the US with scleroderma but she says the organization would like to see fresh research to determine how that number has changed.
