About Steffens Scleroderma Foundation

Who We Are

A Little Bit About Steffens Scleroderma Foundation

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

Steffens Scleroderma Foundation (501c3) is a volunteer-based organization based in Albany, NY, but has members/volunteers nationwide. 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.

The rare disease population desperately needs the focused attention of dedicated parties willing to give selflessly. 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. 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.

Steffens Scleroderma Foundation provided support for research presentations on scleroderma by medical, and pharmacy students, research assistants, and even patients themselves. Hannan Bowen, Mustafa Mustdad and Amy Gietzen (board secretary) work tirelessly on educational articles, research, and abstracts showcasing our interprofessional approaches.

With doctors constantly pushing the boundaries of medical research, our future is looking brighter than ever. The members of the medical leadership team (Doctors Shapiro, Allen, Farrell, Frech, Hughes, Saketkoo, Kessler, Whelan, and Leader) are involved in identifying new treatments for scleroderma and degos disease by promoting disease awareness for earlier diagnosis and rapid diagnosing of systemic diseases in individuals with skin involvement.

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The tagline in our logo, “Breaking the Chains” symbolizes the fight to free those affected by scleroderma from the physical and emotional constraints of the disease. Inspired by both the biology of collagen and the broader struggle for liberation, the phrase reflects a bold, hopeful push toward freedom and healing.

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Have questions about our organization or educational programs?

Degos Disease Foundation Connection

Why is the Degos Disease Foundation Involved?

The Degos Disease Foundation operates under—and is a vital part of—the Steffens Scleroderma Foundation.

The Steffens Scleroderma Foundation became involved with Degos disease through Ernie DuPont, the son of a former board president. Ernie battled Degos disease and passed away in 2018, but his fight lives on through our work. With support from his physician—also our Chief Medical Officer—Doctor Shapiro, the foundation continues to push for research, education, and better treatment options.

All donations to both foundations go directly to Steffens, ensuring funds are responsibly managed and used to support Degos disease and scleroderma initiatives.

While Degos disease and scleroderma are different, they share key features, including small blood vessel damage and fibrosis affecting organs like the heart and lungs. A deeper understanding of one could improve treatments and shed light on the vascular aspects of all similar diseases.

Our foundation has helped develop treatment protocols that have led to extended remission for some patients. We’ve built a global network of experts who share their research and are available to help patients and physicians navigate this rare disease.

Visit the Degos Disease Foundation website for the latest updates and resources.

Learn More About Degos Disease

Steffens Awards

Sister Mary Rose Noonan Award

The Sister Mary Rose Noonan Award is given annually to individuals who exemplify compassion and commitment to improving the lives of those with scleroderma.
Ernie Dupont Award

The Ernest J. Dupont Award is presented to outstanding health care professionals who provide exemplary care to scleroderma patients.
Lou Renna Award

The Lou Renna Award is presented to individuals who have shown extraordinary leadership in advancing scleroderma education, advocacy, and research.