Our Mission
The National Scleroderma Foundation is a 501(c)(3) nonprofit organization founded in 1998 to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support networks.
Supported by a network of thousands of individuals across the United States, the Foundation helps those living with scleroderma by providing support and education at the same time that it funds peer-reviewed scleroderma research. Since its founding, the Foundation has committed over $30 Million to discover the cause, understand the mechanism, and overcome scleroderma forever.
The Foundation is home to the National Scleroderma Conference—the only educational program of its kind and scope in the U.S.—which provides access to leading scleroderma experts and up-to-date information while serving as the central meeting ground for the scleroderma community. In addition, the Foundation's Stepping Out to Cure Scleroderma walks are the country's premier awareness and fundraising events which are organized by the Foundation’s local chapters and take place throughout the year at multiple locations and virtually across the country.
The Foundation is led by a dedicated, volunteer Board of Directors that exercises its fiduciary responsibilities, an extraordinary, volunteer Medical & Scientific Advisory Board comprised of world-renowned physicians and scientists, and an exemplary professional staff committed to advancing its mission through the organization's cultural values of care, connection, diversity, integrity, meaningful work, and trust.
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Our Impact
Mindy: Hi, I'm Mindy. On a crisp, December day, I was in Rome with my family at a piazza outside of the Vatican. Only I wasn't. That is what we had planned. But, instead, I lay in a hospital bed, unaware of everything in a coma in Denver, Colorado. Before the event, I had been very active. For about 18 months, I actually should've been paying attention to my body. I had been feeling increasingly breathless when I exerted myself and I began to have horrible tingling and numbness in my then purple and red fingers. Even my toes would get red and purple. The bottom of my feet would be purple when I came out of the shower. So I decided to seek medical assistance. Upon becoming frustrated with my initial rheumatologist, who really just poo-pooed my symptoms, I sought out another rheumatologist and 4 months later I was meeting with him. In my first-ever discussion, I asked him whether I might have scleroderma. He told me 'You don't want scleroderma. It's awful.' He ordered the simple bloodwork necessary and 2 weeks later, I was being told that I had scleroderma. I still didn't know I had lung disease. And that's what happened. And then 5 days later was the end of my first life and now I'm onto my second life. Mindy's husband: Two days before we were supposed to fly to Italy, that evening, I had spent the night packing. Mindy had spent the night really napping. And in the morning, when I woke her up, she was disoriented. And the breathing had become more labored. When she was fairly non-responsive to getting up, I realized there was something much more serious going on and I called 911. Things had gone from bad to really bad. Mindy: This is what had happened. Apparently, I had Interstitial Lung Disease which was advanced enough to cause my lungs to begin hemorrhaging. And, in order to get that under control, I was intubated, I had a tracheotomy, I had tubes everywhere. Mindy's husband: 97 days before first stepping foot into the hospital, until Mindy came home. It's hard. Really hard. Scleroderma really attacks in places that we all take for granted. Little things. Fingers. Waking up in the morning and watching Mindy try to stretch her fingers so that they can grab a water bottle so that she can take water with the morning medications. But, I will tell you that we maintain a really positive attitude in our house. As the saying goes from Tom Hanks 'There's no crying in baseball.' There's no crying in our house. We take things once day at a time. We have a positive attitude. Mindy: I fought hard, I worked hard, and eventually I was able to go home. My life now is far different than before, mostly with limitations such as requiring oxygen truly 24 hours a day. But other than that, I am able to do many things. And quite honestly those are enough for a wonderful life. Mindy's husband: Scleroderma doesn't just affect the person who has it. I mean, it's impacted our entire family from trying to do things together and where we can do things together and staying at lower altitude with her disease. We've managed as a family to compensate for the impacts of scleroderma. Mindy: About a year after I got home from the hospital, I finally reached out to the National Scleroderma Foundation. That had been recommended to me at my first rheumatology appointment with Aryeh Fisher at UC Health after the event occurred. I didn't do so at first because I was reluctant to get involved with people, so many of whom would have terrible stories such as my own. I'm happy to say that that wasn't the case at all and I wish I had reached out sooner. The Foundation and it's local chapter - the Rocky Mountain Chapter of the National Scleroderma Foundation, provides those affected by scleroderma, the patients, and the families with wonderful resources, support groups - all of this was available to me online. At this point in time, I am hoping for a wonderful future with my husband and traveling and visiting our children and future grandchildren and continuing on with our fantastic friends, extended family and just moving forward. I rely upon the research that the Scleroderma Foundation funds. I ask that you give generously to fund the National Scleroderma Foundation and its amazing work for all of us who are affected by this horrible disease. Thank you for listening to my story.