Welcome to our new website! As I write this I feel as if I’m welcoming you to a physical space; for us this is the space where we meet, share information and find ways to support each other. It belongs to all of us and with this, I’m inviting you in to enjoy it, to help shape it and to find a place where you find comfort.
Credit for building this beautiful new space goes to Tracy McClure, a terrific web designer and “aunt of the year”. Throughout this process Tracy, has demonstrated infinite patience working with those of us who have no web development skills and dedication to the cause of supporting scleroderma patients and their families. Tracy is the devoted aunt of a young teen who was diagnosed with scleroderma as a child. Since Julia’s diagnosis, her amazing extended family has been committed to supporting research to find a cure and programming to support patients and caregivers. Thank you, Tracy!
Our board member, Elizabeth Theisen, coordinated much of the work with Tracy and even provided some of the photographs of the region, so thanks to Elizabeth too.
The mission of our foundation is threefold; to support scleroderma patients and their families, to educate the public and health professionals about scleroderma, and to stimulate and support research in the hope for a cure. To that end, we need your involvement to provide feedback and as volunteers and board members. Whatever your interest or skill set, we’d love to meet you and discuss how you can get involved.
As with many of us, my involvement in the foundation is personal. My mom was diagnosed with scleroderma in 1995. Elizabeth, my sister and fellow board member was diagnosed with Sjögren’s shortly after Mom died in 2015. Far too many friends have other autoimmune diseases – psoriatic arthritis, celiac disease, Crohn’s disease and rheumatoid arthritis. My hope is finding a cure for one will bring a cure for all, but in the meantime, we need to support each other. I look forward to getting to know each of you and welcoming you into our community. Please get in touch.