News

Stay Connected.

Fill out this form to receive our quarterly email newsletter straight to your inbox. Our newsletter contains the latest information about research and events for Steffens Scleroderma Foundation and Degos Disease Foundation. Also, be sure to let us know if you’re interested in getting involved by clicking the “Volunteer Form” button below!


Featured News

  • Retiring Scleroderma Expert Passes Torch to Next Generation

    Dr. Lee Shapiro (left) and Dr. Michael Allen

    Dr. Lee Shapiro is retiring from Albany Medical Center’s scleroderma clinic after nearly 50 years, passing leadership to Dr. Michael Allen. His contributions, including the Scleroderma Renal Crisis Prevention Card and the Steffens Scleroderma Foundation, have greatly advanced scleroderma care. Congratulations, Dr. Shapiro, on a remarkable career!

  • Scleroderma Inservice

    Celeste Freeman, OTR/L, CHT

    On Tuesday September 24th, 2024 Celeste Freeman, provided a lunch time in-service on scleroderma for the rehabilitation professionals at Nathan Littauer Hospital. Joining her was Debbie Mancini, RN, a patient participant in the 2024 Steffens Foundation IPE, to provide the clinicians with her perspective on the illness. There were 16 staff members of both OTs and PTs in attendance.

  • Advocate of the Year Award

    Award winner Amy Gietzen with CEO Mary Wheatley, IOM, CAE and researcher Carol Feghali-Bostwick, PhD

    Amy Gietzen, Steffens Board Member was awarded the Advocate of The Year Award by the National Scleroderma Foundation this past July 2024! The award is given to an individual who is a leader in the scleroderma community and is active in advocacy and awareness efforts. The award recognizes those who embody the spirit of "speaking up for scleroderma". Congratulations Amy!

Download Previous Newsletters

  • March 2025 Newsletter

    IPE 2025 Virtual Program Scheduled Wednesday, April 9th

    Updated Steffens Website Launching April 1st, 2025

    Steffens Hosts Strategic Planning Weekend – February 15th

    Welcome New Board Members – Dr. Jane Eason, MD & Melissa Marquis, MS, RN and Author

    New Resource – Hand Therapy Course for Scleroderma Now Online

    Dr. Jessica Farrell to Open ACR SOTA Symposium this Spring

    Farewell and Thanks – Bruce Cowan & Patricia Clausi

  • December 2024 Newsletter

    Dr. Lee Shapiro retirement announcement 

    About Scleroderma Webinar 

    Save the date:  April 9, 2025 Next IPE 

    Steffens Foundation Summer Research Fellowship 

    Amy Gietzen awarded The Maureen Sauve Inspiration Award (SPIN)

  • October 2024 Newsletter

    Cruise For A Cure- Sunday, July 14th Tickets on SALE NOW

    June 29th is World Scleroderma Day

    Fall Festival & Barbeque: Save the date - Sunday, September 29th

    Tribute to Dr. Jessica Ann Pye

    Summary: Annual IPE Programming

  • June 2024 Newsletter

    Cruise For A Cure- Sunday, July 14th Tickets on SALE NOW

    June 29th is World Scleroderma Day

    Fall Festival & Barbeque: Save the date - Sunday, September 29th

    Tribute to Dr. Jessica Ann Pye

    Summary: Annual IPE Programming

  • March 2024 Newletter

    IPE 2024 Virtual Program Scheduled Wednesday, April 10th

    Scleroderma Research Update - Scleroderma in Pigmented Skin Populations 

    SAVE the DATE- Sunday, July 14th Cruise for a Cure 

    Degos Disease Foundation New Logo and Research Update

    New Board of Director - Welcome Paula Birch Billingsley 

    Fall Festival scheduled September 29th 

  • December 2023 Newsletter

    Recap of 8th Annual Fall Gala

    Estate of the late Dr. Donald Thurston 

    American College of Rheumatology Annual Conference

    Dr. Jessica Farrell awarded Distinguished Educator Award 

    Welcoming New Volunteers

    The New York Dental Journal published article "Steffens Scleroderma Foundation Interprofessional Education Event"  authors David Leader, D.M.D,. M.P.H.; Daniela Bittar, D.D.S.; Evamarie Cole 

    Mogil's Mobcast 

  • September 2023 Newsletter

    Fall Gala

    Recap of Cruise for a Real Cure 2023

    Welcoming a New Board Member

    National Scleroderma Annual Conference

    Measurements of IPE Impact

  • June 2023 Newsletter

    National Scleroderma Month Happenings

    2023 Interprofessional Education Forum

    Dr. David Leader

    Degos Disease Q&A

    Research Updates

  • March 2023 Newsletter

    The Legacy of the Meenans

    2023 Interprofessional Education Forum

    Dr. Michael Hughes

    Research Updates

  • September 2022 Newsletter

    Degos Disease Support NetworkInterprofessional Education Forum

    Celeste Freeman receives ASHT Paul Brand Award

    Mogil's MobCast

    Dr. Michael Allen Joins Steffens Medical Advisory Board

    Amy Geitzen presenting at the American College of Rheumatology

    Giovanna Fichera, OTD, Research Update

  • June 2022 Newsletter

    Interprofessional Education Forum

    How does IPE move forward?

    The Art of Advocacy Seminar

  • March 2022 Newsletter

    NIH Research Study

    Degos Disease Patient Experience

    Introducing our new Board Member, Bruce Cowan

    Student Research Projects

  • November 2021 Newsletter

  • August 2021 Newsletter

  • May 2021 Newsletter

  • January 2021 Newsletter

  • August 2020 Newsletter

Volunteer

Join us as a volunteer and make a difference! Fill out the volunteer form to let us know your specific area of interest.


Support Us

With your support, we're making groundbreaking research happen. Make a difference with your donation today!