Scleroderma community gears up for awareness month in June
National foundation's theme is 'Stories of Strength'
June is Scleroderma Awareness Month, and the scleroderma community is kicking into gear to spread awareness about the rare, chronic disorder.
The National Scleroderma Foundation has selected “Stories of Strength” as this year’s theme, encouraging people with scleroderma to share their stories about how the disease has affected them and how they have adapted to living with scleroderma.
The foundation is encouraging people to create short videos detailing their experiences, sharing them on social media with the hashtag #storiesofstrength and emailing them to the foundation. Examples of videos, alongside tips and tricks for making videos, are available on the foundation’s website.
Community members are also encouraged to wear teal and light their homes and offices with teal, the color used to advocate for scleroderma awareness.
The foundation is hosting events including its #TealTalk series for the community to come together to discuss topics like finding strength, dealing with ulcers on the fingers, and using daily living aids. Several local chapters across the U.S. are hosting walk events to fundraise as part of the foundation’s Stepping Out to Cure Scleroderma initiative.
Events planned in Canada, UK
In Canada, the Make a Move for Scleroderma initiative features a variety of in-person fundraising walks. People are encouraged to spread the word on social media using the hashtags #Scleroderma, #HardWordHarderDisease, #MakeAMove2025, and #MAM4Scleroderma. All proceeds will go to Scleroderma Canada to provide education, support, and advocacy to people with scleroderma, and to provide funding for research towards a cure. The funding goal is CA$200,000 (about $145,000).
A virtual option called Move Your Way is also available. “By participating in Move Your Way, you will still be making a move in your favourite way – walking, running or cycling, climbing stairs, doing yoga, gardening, fishing – the options are endless!,” the organization says on its website.
Across the Atlantic, Scleroderma and Raynaud’s U.K. is hosting walks and encouraging engagement on social media with the hashtags #SRUK, #sclerodermaawareness, and #takeaction. The organization is also encouraging people in the U.K. to contact their elected representatives to advocate for policies to support the scleroderma community.
Other organizations, including the Scleroderma Research Foundation, have plans for this year’s awareness month, encouraging engagement on social media with the hashtag #SayScleroderma and providing profile frames to help community members show their support on social media.
Scleroderma awareness month culminates in World Scleroderma Day on June 29. The day is part of a global effort to highlight the need to raise awareness and advocate for institutional policies to support people affected by scleroderma. The Federation of European Scleroderma Associations chose that date in 2009 to commemorate artist Paul Klee, who died of systemic sclerosis on June 29, 1940.
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