Scleroderma Warriors Project Expands Online Presence
The new platform will create an online community to connect scleroderma patients, families, and caregivers who may feel isolated due to the rareness — and lack of awareness — of the disease.
“As with other rare diseases Scleroderma is a lonely one to live with; this feeling of isolation is what encouraged me to build this online platform. I hope to one day see this site become not only an online community but also an online family,” Melanie Gornick, founder and chairwoman of Scleroderma Warriors, said in a press release.
The organization’s mission is to increase public awareness of scleroderma, connect members of the scleroderma community, and provide resources and support for individuals affected by scleroderma.
The project offers online discussion forums, links to information about the condition, as well as one-time grants in $2,000 increments to promote post-secondary education in youth who have been diagnosed with limited or diffuse systemic scleroderma, and to children and grandchildren of people with the diffuse scleroderma subtype.
Gornick founded the non-profit in 2019 after she was diagnosed with diffuse systemic scleroderma.
“When I was diagnosed in 2019 I had never heard of the disease, in fact, I couldn’t even pronounce the word,” Gornick said. “Off the top of my head I can name at least a dozen people I could call for support and guidance if my diagnosis was cancer or diabetes, but Scleroderma, not one,” she stated on the project’s website.
Scleroderma is a chronic autoimmune disease in which the body’s immune system mistakenly attacks its healthy tissue. The disease primarily affects the connective tissue that supports and protects other tissue types and is characterized by hardening of the skin. Complications of the heart, lungs, kidneys, and digestive system are common in scleroderma.
“The effects extend to family, friends, caregivers, and others. This notion encouraged me to build onto this idea by matching those who love and care for us with mentors who are or who have experienced similar journeys,” Gornick added.
The new platform was designed by Greater Thought Media and Design.