June is Scleroderma Awareness Month, and scleroderma communities around the world are kicking into gear to spread awareness about this rare autoimmune disease that I was diagnosed with back in November 2018.
As winter’s chill sets in around Australia, imagine facing the cold with a condition that makes warmth not just a comfort, but a necessity. For over 6,000 Australians living with scleroderma, this is a daily reality.
Throughout June, during World Scleroderma Awareness Month, Scleroderma Australia invites you to “Snuggle Up” and make a tangible difference.
“Snuggle Up for Scleroderma” is more than a call to stay warm; it’s a nationwide movement to raise funds for specialist scleroderma nurses. These dedicated professionals provide essential support, helping patients navigate the complexities of this chronic autoimmune disease.
It is the eighth year of Scleroderma Australia’s Snuggle Up campaign, and your involvement can make it the most impactful yet. Whether you donate, host an event, or simply spread the word, your actions can help contribute towards a warmer, more supportive community for those living with scleroderma.
In the U.S. the National Scleroderma Foundation (NSF) has selected “Stories of Strength” as their theme for this year, encouraging people with scleroderma to share their stories about how the disease has affected them and how they have adapted to living with scleroderma.
They are shining a light on powerful, inspiring journeys of individuals and families impacted by Scleroderma, encouraging people to create short videos detailing their experiences, sharing them with the NSF and on social media with the hashtag #storiesofstrength.
In Canada, the Make a Move for Scleroderma initiative features a variety of in-person fundraising walks with proceeds going towards providing education, support, and advocacy for people with scleroderma.
A virtual option is also available called Move Your Way. “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.
People are encouraged to spread the word on social media using the hashtags #Scleroderma, #HardWordHarderDisease, #MakeAMove2025, and #MAM4Scleroderma.
In the United Kingdom, Scleroderma and Raynaud’s U.K. is also hosting walks and encouraging engagement on social media with the hashtags #SRUK, #sclerodermaawareness, and #takeaction. They are also encouraging people to contact their elected representatives to advocate for policies to support the scleroderma community.
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.
Blessings ’til next time 🙂
The life and times of Perry... 