The Scleroderma Foundation Evolves Into the National Scleroderma Foundation

The Scleroderma Foundation unveiled a new name, the National Scleroderma Foundation, to help reach and educate a larger audience and connect more people in the scleroderma community with the resources they need. Along with the name change, the foundation unveiled a new logo and website to better reflect and bring together the scleroderma community.

The National Scleroderma Foundation’s mission is to advance medical research, promote disease awareness, and provide support and education to people living with scleroderma, their families and support network.

With its vision to be a relentless force to find a cure and improve the lives of people affected by scleroderma, the National Scleroderma Foundation name reflects the organization’s goal to connect the scleroderma community and fund innovative research to discover the cause, understand the mechanism, and overcome the disease forever.

“The Foundation has supported me in several ways.” said Andrew Botieri, a business development trainer and 23-year-oldpatient with scleroderma. “They allowed me to be the keynote speaker at their 2017-2018 national conferences, which allowed me to meet my scleroderma family, as I call them, and we call ourselves, the ‘sclero sisters’ and the ‘sclero brothers’.”

Approximately 300,000 Americans live with scleroderma, a rare rheumatic disease that affects connective tissue and the vascular system producing excessive collagen that causes fibrosis in the skin (localized) or in internal organs (systemic sclerosis). The result can be disfigurement and disability, and for some, it can be life-threatening. It is still unknown what causes the rare autoimmune disease and there is no cure. Scleroderma most often affects women aged between 25 and 55 years, but it also affects men, in addition to young children and teens in the form of pediatric scleroderma.

“I noticed that my fingers change color when I enter a cold room.” said Monica Ramirez, discussing what led to her initial diagnosis in 2009. “I mentioned it to my best friend who was my primary doctor. As soon as she saw my fingers, she ordered a lot of tests, and referred me to a specialist. The rheumatologist diagnosed me with scleroderma.”

According to Mary Wheatley, CEO of the National Scleroderma Foundation, changing the foundation’s name better reflects the scope of the foundation’s work and its national community. “The scope of our work is nationwide, and we need all hands on deck in the fight against this disease. That includes families and volunteers, support groups that inspire others by sharing their journeys, leading clinicians and researchers and many more who we want to connect to our scleroderma community. These connections will help increase support for those affected by scleroderma, drive greater awareness of the disease, and hopefully lead to finding a cure.”

Scleroderma presents differently in each person making it more complicated to diagnose and treat since there is no clear path. It’s essential that people affected by the disease find the resources that help them live better with scleroderma, and that’s how the National Scleroderma Foundation can help.

The National Scleroderma Foundation brings together chapters, stakeholders, outreach, and research under one roof to strengthen and leverage the resources for the national scleroderma community.

Learn more about the National Scleroderma Foundation at https://scleroderma.org/.