COCONUT CREEK, FLA. – On January 27, 2018, teams of enthusiastic individuals and families gather at Tradewinds Park, 3600 West Sample Road in Coconut Creek, for the annual Stepping Out to Cure Scleroderma walk/run. Organized by the Scleroderma Foundation Southeast Florida Chapter, check-in opens at 8 a.m. for the run and at 9 a.m. for the walk. The run starts at 9 a.m. and the walk begins at 10 a.m. Stepping Out to Cure Scleroderma is the signature fundraising event of the Scleroderma Foundation. Each year, Stepping Out raises money to fund research into the cause and cure for the disease, and to provide necessary support resources and educational forums to improve quality of life for people with scleroderma and their families. Participants are strongly encouraged to sign up early online at scleroderma.org/steppingoutcoconutcreek, where they can create a personal page, upload a photo, and tell their scleroderma story. The website also offers robust online fundraising tools that track progress and help recruit a team.
“Our walkers and volunteers make Stepping Out to Cure Scleroderma a wonderful day for the whole family,” said Ferne Robin, Executive Director of the Scleroderma Foundation Southeast Florida Chapter. “Last year we broke our all-time attendance and fundraising records. Please help us do even better this year.”
Scleroderma is a chronic connective tissue disease that can cause disfigurement and disability, and can be fatal in some cases. Anyone can have scleroderma. It’s estimated that 300,000 Americans have the disease, including as many as 7,000 children. There are several forms of scleroderma, including systemic sclerosis, which affects internal organs, and localized scleroderma, which tends to be limited to the skin. There are no F.D.A. approved medications to treat the disease; however, fundraising from Stepping Out and other sources has helped achieve important discoveries that have improved mortality rates and could lead to more dramatic breakthroughs with sustained funding.
The Scleroderma Foundation is a national nonprofit organization with a highly respected peer-review grant program that invests more than $1 million every year into basic science research of scleroderma. While the national office manages the research effort, 19 local chapters oversee 160 support groups across the country that give people a chance to connect and to learn from others coping with the disease. Both the national office and chapters offer education programs that provide knowledge and insights about managing scleroderma, research and treatments, and emotional support. To learn more about scleroderma and the Scleroderma Foundation, visit scleroderma.org, email SFinfo@scleroderma.org, or call (800) 722 HOPE .
Scleroderma is a rare autoimmune 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). More than 300,000 Americans live with some type of scleroderma. Today, the face of scleroderma includes people of all ages, genders, and backgrounds. Scleroderma can affect young parents, children, grandparents, and teenagers, causing pain, disability, and death. Thanks to the passion and dedication of volunteer leaders, scientists and supporters, great strides have been made. Yet despite these advancements, the challenges in scleroderma today are greater than ever, requiring committed resources to achieve ambitious goals and outcomes.
ABOUT THE NATIONAL SCLERODERMA FOUNDATION
The National Scleroderma Foundation is a 501(c)(3) charitable organization founded in 1998 to advance medical research, promote disease awareness, and provide support and education to people with scleroderma. Supported by a network of thousands of individuals across the United States, the Foundation aims to help people living with scleroderma find their best path.