Steffens Scleroderma Foundation Newsletters

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Steffens Mailing List

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

• The Legacy of the Meenans
• 2023 Interprofessional Education Forum
• Dr. Michael Hughes
• Research Updates

• 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

• Interprofessional Education Forum
• How does IPE move forward?
• The Art of Advocacy Seminar

• NIH Research Study -
• Degos Disease Patient Experience
• Introducing our new Board Member, Bruce Cowan
• Student Research Projects

• Of  Zebras and Elephants: Parallels between pediatric Kohlmeier-Degos disease and vascular manifestations of Covid-19               by Dr. John Patrick Whelan
• Scleroderma Renal Crisis 
• Current Pharmacy Studies
• Pictures from the Gala

• Expanding Medical Advisory Board
  • Dr. Lesley A. Saketkoo
  • Dr. Tracy M. Frech
  • Dr. John Patrick Whelan
  • Stephen Veit
• Welcome Steve Rosenblum
• Cruise for a Real Cure July 17, 2021
• Steffens Presents at National Conference
• Two New Board Members

• 4th Annual Interprofessional Education Conference
• Carla Gage, our new President of the Steffens Scleroderma Foundation
• Scleroderma Updates
• Degos Diseas Updates
• Spotlight on Board Member, Theresa Slayton, Degos Disease Patient
• New Board Member, Amy Gietzen

• Current Projects ongoing 2021
• COVID-19 Vaccine
• Student Research

• What is Scleroderma?
• What is Degos Disease
• Dr. Lee Shapiro, Chief Medical Officer
• Research

Scleroderma In the News

Cell Therapy Results Spur Pivotal Trial in Diffuse SCL Hand Function

For information about COVID-19 and the impact on people living with scleroderma, please visit the Scleroderma Foundation.

Jessica Farrell, Pharm.D, Instrumental in Drug for Scleroderma covered by Medicare PartD

Collaborative Forum Provides Interprofessional Learning Opportunities for 200 Health Sciences Students

Systemic Scleroderma

Scleroderma Affects Skin and More

NORD Rare Disease Database: Scleroderma

Degos Disease In the News

Long Island Boy’s Disease Might Be Degos

Clinical Center patient experiences enrich International Degos Disease Symposium

Capital Region Doctor’s Experience with rare Degos disease prompts conference

NORD Rare Disease Database: Degos Disease

Featured News

Steffens Scleroderma Foundation presented on the Interprofessional Education Program: Patients Educating Future Healthcare Professionals and the Art of Advocacy at the National Scleroderma Conference in Orlando, FL (July, 2023). 

Steffens Scleroderma Foundation Board Member Michelle Morgan speaks with a local news reporter about scleroderma and Degos disease. Watch the interview.

Watch Sister Mary Rose Noonan's story, featured on WMHT TV, and hear how she's coping with scleroderma symptoms.