Steffens Scleroderma Foundation Newsletters

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Steffens Mailing List

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 Newsletter 

• 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 

• 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 

• Fall Gala
• Recap of Cruise for a Real Cure 2023
• Welcoming a New Board Member
• National Scleroderma Annual Conference
• Measurements of IPE Impact

• 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

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

Albany Med Health System : Scleroderma Clinic Offers Expertise - and Reassurance 

Albany Med : Scleroderma Clinic Article link

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.