The Steffens Foundation seeks to support and promote research toward the treatment and cure of Scleroderma and Degos Disease. Of equal importance is our mission to promote awareness and understanding of these disorders, especially among healthcare professionals. Familiarity with the clinical presentation of these illnesses by frontline practitioners improves the likelihood of early recognition and diagnosis, as well as timely access to the specialized intervention necessary with rare and ultra rare diseases.
The purpose of this page is to enhance understanding of Scleroderma and Degos Disease for emerging and practicing healthcare professionals. Some of the content may have originally been intended for the support of individuals with these illnesses. Some of the other resources available on this page have a twofold purpose; educating those with the conditions, as well as educating their loved ones, as well as healthcare providers who are interested in the subject matter.
It is our goal to provide excellent educational content for all individuals desiring to learn about Scleroderma, Degos Disease, and related illnesses. We hope you find the content on this page helpful in your pursuit of this goal.
Join us as we showcase artwork for amazing patients living with Scleroderma and Degos Disease. The night will be filled with Food, Music, Silent Auction and so much more!
Time: 6:00pm ET
Dr. Lee Shapiro and Mary Rose Noonan presented
the first Sister Mary Rose Noonan award to Celeste Freeman, Michelle Morgan & Steve Rosenblum Samantha Sattler
The 4th annual fall fundraising event went virtual in light of the current pandemic and the need for social distancing. Friends of the foundation came together for a Zoom event on November 14, 2020. The evening of comedy and entertainment featured a hilarious standup routine called "Comedy, Clocks and Casseroles" by Carole Deyoe. Carole inspired and reminded us that laughter is truly the best medicine!
Scleroderma patient Amy Gietzen was awarded the 2020 Ernie J. DuPont Award for her tireless efforts to advocate, support, and educate others on a local, state, and national level!
Bruce Cowan, Scleroderma Foundation Tri-State Chapter executive director, was honored as the 2020 Louis P. Renna Recognition Award for his outstanding efforts to advance education and research for scleroderma in order to help those struggling with this rare condition.
The event also included an online auction, trivia, a musical act, an update on the exciting medical research for scleroderma and Degos disease treatments, and lots of laughter and fun! Thank you to our generous sponsors—Holistic Wealth, Law Firm of Alex Dell, Knapek Gabriele & Bottini, Marra's Pharmacy and the Albany Financial Group—and to everyone who participated! We hope to be back in person next year! Stay tuned.
The 2019 Fall Dinner raised more than $17,000!
U.S. Congressman Paul Tonko was the guest of honor at the 2019 dinner for his advocacy on behalf of patients and support medical research funding.
Steffens Scleroderma Foundation board member Celeste Freeman, OTR/L, CHT received the 2019 Ernie J. DuPont Award for her unparalleled commitment to patients.
Steffens Scleroderma Foundation
P.O. Box 38037
Albany, NY 12203