About Us
Steffens Scleroderma Foundation
Our Mission:
The Steffens Scleroderma Foundation’s mission is to:
- Support and promote research toward treatment and cure of scleroderma, Degos disease, and other related disorders
- Promote awareness and understanding of these disorders, especially among healthcare professionals
- Encourage collaborative efforts, nationally and internationally, aimed at realizing these goals
Named in memory of Ann Elizabeth Steffens, a scleroderma patient who had an unparalleled desire to make a difference, the foundation was made possible by a generous gift from her mother, Helen Polenz. We proudly carry on Ann’s spirit of helping others and one day hope to spare families from losing a loved one to these diseases.
Our Challenge:
In this age, rare disease organizations such as the Steffens Scleroderma Foundation face steep challenges in securing focused support with few resources devoted to understanding and developing treatment for conditions that affect a smaller population.
For people who find themselves suddenly facing serious, often life-threatening disease, the basics—time, focus, and funds—are crucial.
We understand that while we as a society invest in treatments that affect large numbers of individuals, we must also maintain vigilance on diseases that affect the few. It is precisely the model of working both sides of the problem that maximizes the contributions to the general body of knowledge.
Our Efforts:
The foundation is actively supporting research and the development of new treatments for scleroderma, Degos disease and other related disorders. Just look at the advancements our work has made in the Degos disease community. Today, people are living in extended remission because of the treatment protocols devised through the support of the Steffens Scleroderma Foundation.
In addition to advancing medical research, the foundation is a leader in interprofessional medical education focused on cross-discipline awareness and care coordination. We are committed to our work and seek a brighter future for people affected by these rare diseases.
