Several North American advocacy and research non-profit organizations will host a virtual flash mob June 29, on World Scleroderma Day, to raise awareness for the disease. The social media event will happen on the heals of more than 100 fundraising walks, tributes and other events held during June’s Scleroderma Awareness Month.
Organizations heading up the World Scleroderma Day social media flash mob are:
- The Scleroderma Foundation – a national non-profit working for scleroderma patients, families and friends. Headquartered in Boston, the Foundation has 21 chapters and 160 support groups working to support, educate and promote research about the disease. In 2015, the Foundation funded $2 million in new research grants.
- The Scleroderma Research Foundation (SRF) – established in 1987 by patient and activist Sharon Monsky, SRF was the first organization dedicated to fund research during a time when little was known about scleroderma. Today, the group is one of the continent’s largest non-profit investors in scleroderma research.
- The Scleroderma Society of Canada – a national advocate for patients working with regional scleroderma organizations and the international community to achieve common goals. The organization is committed to promote public awareness for scleroderma and funding research to find treatments or a cure.
The three organizations are combining efforts for the third consecutive year to boost awareness for the through the “Hard word. Harder disease” (#hardword) campaign.
The scleroderma network continues to increase engagement and online buzz for the June 29 World Scleroderma Day social media event.
According to a press release, this year’s virtual flash mob is organized through Thunderclap – a company specialized in social media campaigns that share important messages in creative ways. Across the globe, partners and supporters will use social media to share the message simultaneously on Facebook and Twitter. The message aims to encourage people to learn more about the disease and pledge to share what they have learned.
Anyone can join the flash mob by visiting Thunderclap.
The campaign is geared to spread the word about the difficulty and severity of scleroderma – a damaging autoimmune disease that hardens the skin and steals the use of patient’s fingers, hands, and limbs. As it advances across the body, uncontrolled growth of fibrous tissue can damage patients’ hearts, lungs, and other organs and often lead to a prolonged and painful end.
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