The National Scleroderma Foundation recognizes World Scleroderma Day with its Scleroderma Awareness Month Campaign, “Let’s Talk About Scleroderma”
DANVERS, MA – World Scleroderma Day is June 29, highlighting June as Scleroderma Awareness Month. Each year, World Scleroderma Day emphasizes the need for increased scleroderma awareness, support, and advocacy for those affected by this life-threatening disease. More than 300,000 Americans live with some form of scleroderma, and there is no cure. In 2009, June 29 was selected by FESCA (Federation of European Scleroderma Associations) as World Scleroderma Day to commemorate Paul Klee, a gifted abstract artist who died of systemic sclerosis on June 29, 1940.
In honor of Scleroderma Awareness Month and World Scleroderma Day, the National Scleroderma Foundation launched its “Let’s Talk About Scleroderma” campaign. During June, the Foundation engaged its community to elevate the awareness of those battling this disease in the hopes of creating better support, education, and research. The theme highlights the Foundation’s belief that discussing scleroderma, whether with family, friends, or colleagues, can increase awareness and better the lives of those living with scleroderma. In addition to social media outreach, the Foundation hosted #TealTalk Lives and #TealTalk Tables to elevate conversations amongst the scleroderma community and create a sense of togetherness. Every Tuesday in June on Facebook Live, CEO Mary Wheatley featured a member of the community to share their scleroderma journey. Each Thursday in June, the Foundation hosted #TealTalk Tables, where the scleroderma community joined together for small group discussions about their experiences with scleroderma and the importance of raising awareness.
In local communities across the country, chapter members embraced the “Let’s Talk About Scleroderma” campaign by sharing content on social media, reaching out to elected officials for State Proclamations and landmark light-ups, and hosting Stepping Out to Cure Scleroderma Walks.
“Our community continues to inspire leaders across the country as they share their resilience, strength and dedication to finding a cure for scleroderma,” shared Foundation CEO Mary Wheatley. “By raising awareness about this devastating disease, our volunteers, members and leaders are hoping to decrease the time to diagnosis for those suffering with symptoms for scleroderma, leading to better outcomes and a better quality of life.”
The efforts to raise scleroderma awareness continue beyond the end of June. Next month, the Foundation will host its 2023 National Scleroderma Conference, and Kids Get Scleroderma Too! Conference; the preeminent scleroderma education event that provides access to world-renowned scleroderma experts and the latest information about symptom management and scleroderma research. The 2023 National Scleroderma Conference and Kids Get Scleroderma Too! Conference will take place in Orlando, Florida, on July 14, 15, and 16. To learn more, visit scleroderma.org/conference.
All are encouraged to join the scleroderma awareness campaign by sharing and reposting Foundation content on Facebook, Twitter, LinkedIn, and Instagram. To learn more about World Scleroderma Day and Scleroderma Awareness Month, visit scleroderma.org/tealtalk.
Scleroderma is a rare rheumatic disease that affects connective tissue and the vascular system causing an overproduction of collagen (fibrosis) in the skin (localized scleroderma), and the internal organs (systemic sclerosis), which can be life-threatening. Anyone can have scleroderma. The cause is not yet known, and there is no cure.
ABOUT NATIONAL SCLERODERMA FOUNDATION
A relentless force in finding a cure and improving the lives of people affected by scleroderma, the National Scleroderma Foundation advances medical research, promotes disease awareness, and provides support and education to people with scleroderma, their families and support networks. Supported by a network of thousands of individuals across the United States, the Foundation is the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome scleroderma forever.