“Know Scleroderma” is the National Scleroderma Foundation’s theme for June 2022 Scleroderma Awareness Month. Scleroderma is a rare rheumatic disease that affects connective tissue and the vascular system causing fibrosis in the skin (localized scleroderma) or internal organs (systemic sclerosis), which can be life-threatening. Throughout the month, the Foundation will post videos and photos of individuals affected by scleroderma on its Facebook, Twitter, Instagram, and LinkedIn social media accounts. The campaign highlights the Foundation’s belief that to know scleroderma is to understand the impact of a rare disease that is life-threatening for many and can cause physical disabilities and change lives forever. Featured in the campaign is recording artist Ashley Barron, who was diagnosed with localized scleroderma at age 5, and is the Foundation’s Celebrity Ambassador.
“To know scleroderma is to make individuals with scleroderma feel seen and understood,” said Barron. “When I was diagnosed, I had never heard of scleroderma before. I didn’t know anybody who had scleroderma. I didn’t know there were any resources out there. It was just my parents and I trying to navigate this journey.”
Also featured in the Know Scleroderma campaign are preeminent physicians and researchers Virginia D. Steen, MD, Georgetown University, John Varga, MD, University of Michigan, and Carol Feghali-Bostwick, PhD, Medical University of South Carolina.
Awareness month is punctuated on June 29 by World Scleroderma Day, which commemorates Paul Klee, a gifted, abstract artist who died of systemic sclerosis on June 29, 1940. Klee’s paintings were strongly influenced by his illness.
All are invited to join the National Scleroderma Foundation and all members of the scleroderma community during June and throughout the year to help overcome scleroderma forever.
ABOUT ASHLEY BARRON
Ashley Barron is country music artist who embraces the independent and powerful country woman aura in her writing and music. Influenced by the country greats such as Johnny Cash and other modern stars like Miranda Lambert, she now incorporates her life experiences and stories into her writing, creating passionate, home-grown, and relatable music. Her past single, “Beer in a Bar,” received critical acclaim and topped in Billboard at #37. Her next release, “Let Me Go,” showed her strength both lyrically and vocally. Ashley’s newest single, “The Wind,” is an encouraging anthem to stay strong and keep going when life gets difficult. Her self-titled, debut album is available now! To learn more: ashleybarronofficial.com.
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
The National Scleroderma Foundation is a relentless force for people who have scleroderma as it advances medical research, promotes disease awareness, and provides support and education to people with scleroderma, their families and support networks. Its highly regarded peer-reviewed research grant program aims to discover the cause, understand the mechanisms, and overcome scleroderma forever. scleroderma.org
Release Date: June 1, 2022