Steffens Scleroderma Foundation

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Steffens Scleroderma Foundation

www.steffens-scleroderma.org Ann's nature was to help others, and she participated in several research studies throughout her life.

The Steffens Scleroderma Foundation was formed in memory of Ann Steffens who was diagnosed with scleroderma in 1984 and passed away in 1997. Her mother Helen Polenz donated the funds to create the research center in the hope of sparing others the pain of losing a loved one to this disease.

09/07/2026

Every step forward in rare disease care is powered by researchers, clinicians, advocates, caregivers and people living with rare diseases who share their experiences to deepen understanding.

This Labor Day, we recognize the people advancing scleroderma, Degos disease and rare disease research and care.

Through collaboration, research and education, we support earlier diagnosis, informed care and better patient experiences, while providing Degos disease resources for patients, clinicians and researchers.

𝗣𝗿𝗼𝗴𝗿𝗲𝘀𝘀 𝘁𝗮𝗸𝗲𝘀 𝗽𝗲𝗼𝗽𝗹𝗲.

Share this post in appreciation of those making a difference in rare disease care.

09/03/2026

𝗝𝗼𝗶𝗻 𝗨𝘀 𝗮𝘀 𝗪𝗲 𝗖𝗲𝗹𝗲𝗯𝗿𝗮𝘁𝗲 𝘁𝗵𝗲 𝗟𝗶𝗳𝗲 𝗼𝗳 𝗖𝗮𝗿𝗼𝗹𝗲 𝗣. 𝗗𝗲𝘆𝗼𝗲 ❤️

Please join us for an afternoon and evening of memories, fellowship, laughter and love as we honor and celebrate Carole's life.

Carole was a true warrior, a passionate patient advocate and a beloved member of the scleroderma community.

Through conferences, educational programs and countless personal connections, she shared her experiences generously and inspired so many.

Her warmth, humor and spirit touched everyone she met, and she will be deeply missed.

📅 𝗦𝘂𝗻𝗱𝗮𝘆, 𝗦𝗲𝗽𝘁𝗲𝗺𝗯𝗲𝗿 𝟲
🕒 Gathering begins at 3 p.m.
🍽️ Food served 5-6 p.m.
🌅 Celebration at dusk

📍 𝟮𝟳𝟲𝟯 𝗡𝗬-𝟯𝟬
Gloversville, NY 12078

𝗥𝗦𝗩𝗣 𝗯𝘆 𝘁𝗲𝘅𝘁: 𝟱𝟭𝟴-𝟵𝟮𝟭-𝟲𝟲𝟯𝟮.

In your text, please include your name and the number of people in your party who will be eating the provided food. You're also welcome to bring your own food.

We hope you can join us as we remember, honor and celebrate a life that meant so much to so many.

Please help us honor Carole by 𝘀𝗵𝗮𝗿𝗶𝗻𝗴 𝘁𝗵𝗶𝘀 𝗽𝗼𝘀𝘁. ❤️

09/01/2026

As the season begins to turn, we're grateful for every person who helps move awareness, connection and support forward.

08/25/2026

𝗡𝗲𝘄 𝗼𝗻 𝗠𝗼𝗴𝗶𝗹’𝘀 𝗠𝗼𝗯𝗰𝗮𝘀𝘁: 𝗔 𝗦𝗰𝗹𝗲𝗿𝗼𝗱𝗲𝗿𝗺𝗮 𝗖𝗵𝗮𝘁

Mentorship and student led research play a powerful role in strengthening scleroderma understanding.

Mogil’s Mobcast grew from the vision of Ann Mogilevsky, who brings twenty years of lived experience with scleroderma to a podcast created for education, connection and community support.

Episode 127 features 𝗗𝗿. 𝗟𝗲𝗲 𝗦𝗵𝗮𝗽𝗶𝗿𝗼 and 𝗔𝘃𝗻𝗶 𝗦𝗮𝗻𝗴𝗵𝘃𝗶, a third year medical student at Albany Medical School, in a conversation inspired by curiosity, collaboration and the hope of improving life for people living with scleroderma.

This episode is for everyone in the scleroderma community, including families, friends and caregivers who walk alongside those living with the disease.

𝗟𝗶𝘀𝘁𝗲𝗻 𝗻𝗼𝘄:

𝗔𝗽𝗽𝗹𝗲 𝗣𝗼𝗱𝗰𝗮𝘀𝘁𝘀: https://tinyurl.com/4rn88uet
𝗦𝗽𝗼𝘁𝗶𝗳𝘆: https://tinyurl.com/y7n7efj4

Please share this conversation with someone who may find it meaningful.

08/20/2026

𝗗𝗿. 𝗧𝗵𝗼𝗺𝗮𝘀 𝗔. 𝗠𝗲𝗱𝘀𝗴𝗲𝗿, 𝗝𝗿. devoted his career to advancing the understanding and treatment of scleroderma while caring deeply for the people whose lives were affected by the disease.

Through his clinical care, research and mentorship, Dr. Medsger helped shape the field of scleroderma medicine.

His influence endures in the patients he cared for, the clinicians he taught and mentored and the physicians and researchers who continue to build on his work.

Dr. Medsger's mentorship had enormous impact on shaping the career of Dr. Shapiro, founder of the Steffens Foundation.

Dr. Shapiro was a rheumatology fellow in Pittsburgh from 1980 to 1982 and credits Dr. Medsger with a critical role in inspiring , encouraging, and supporting the development of a scleroderma center in Albany.

We remember Dr. Medsger with profound gratitude for his compassion, his leadership and a lifetime of dedication to the scleroderma community.

We extend our heartfelt condolences to his family, friends, colleagues, former trainees and patients.

𝗥𝗲𝗮𝗱 𝗺𝗼𝗿𝗲 𝗮𝗯𝗼𝘂𝘁 𝗗𝗿. 𝗠𝗲𝗱𝘀𝗴𝗲𝗿’𝘀 𝗹𝗶𝗳𝗲 𝗮𝗻𝗱 𝗹𝗲𝗴𝗮𝗰𝘆:
https://www.englishfuneralhome.com/obituary/DrThomas-MedsgerJr

08/20/2026

Our Fall Fundraiser has a new date. Please save the date and plan to join us this fall.

𝗦𝘂𝗻𝗱𝗮𝘆, 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 𝟭𝟴
𝟱 𝗣𝗠 𝘁𝗼 𝟴 𝗣𝗠
𝗦𝗵𝗮𝗸𝗲𝗿 𝗛𝗲𝗿𝗶𝘁𝗮𝗴𝗲 𝗦𝗼𝗰𝗶𝗲𝘁𝘆 | 𝗔𝗹𝗯𝗮𝗻𝘆, 𝗡𝗬

We’re looking forward to an evening of community and connection. Event and registration details will be shared soon.

Please pass along the new date to anyone who may want to join us.

08/07/2026

Some moments don’t need a stage. Just good people, open conversation and a shared commitment to the community.

Dr. Lee Shapiro, Hannah Bowen and many others helped make 𝘾𝙧𝙪𝙞𝙨𝙚 𝙛𝙤𝙧 𝙩𝙝𝙚 𝘾𝙪𝙧𝙚 feel personal, welcoming and centered on the heart of our mission.

We’re grateful to everyone who joined us on the Hudson and to all who were with us in spirit. Together, in person and in spirit, we continue moving this mission forward.

08/06/2026

Cruise for the Cure 2026 came together through generosity, care, and hard work.

We’re grateful to Dr. Shapiro, Dr. Allen, Celeste Freeman, Hannah Bowen, Theresa and Mark Slayton and everyone who helped make the day welcoming, meaningful and memorable for the scleroderma and Degos disease community.

Thank you for helping create a day rooted in connection, community and hope.

08/04/2026

The people behind the purpose.

Board members, volunteers and staff came together last Sunday to help make this year’s 𝘊𝘳𝘶𝘪𝘴𝘦 𝘧𝘰𝘳 𝘵𝘩𝘦 𝘊𝘶𝘳𝘦 such a memorable day.

We’re grateful for the time, heart and teamwork each person brought aboard.

07/31/2026

A big thank you to the Dutch Apple Cruises staff for making the 2026 𝘾𝙧𝙪𝙞𝙨𝙚 𝙛𝙤𝙧 𝙩𝙝𝙚 𝘾𝙪𝙧𝙚 such a wonderful afternoon.

You welcomed everyone aboard, kept things running smoothly and made our guests feel right at home. Your kindness, professionalism and hospitality helped create a relaxed, meaningful day on the Hudson.

We’re also grateful to the Renna family for continuing this special tradition and for the care, generosity and heart they bring to the event each year.

Thank you all for helping make the day so memorable.

𝗛𝗲𝗹𝗽 𝘂𝘀 𝘁𝗵𝗮𝗻𝗸 𝘁𝗵𝗲 𝗗𝘂𝘁𝗰𝗵 𝗔𝗽𝗽𝗹𝗲 𝘀𝘁𝗮𝗳𝗳 𝗮𝗻𝗱 𝘁𝗵𝗲 𝗥𝗲𝗻𝗻𝗮 𝗳𝗮𝗺𝗶𝗹𝘆 𝗶𝗻 𝘁𝗵𝗲 𝗰𝗼𝗺𝗺𝗲𝗻𝘁𝘀.

Address

P. O. Box 38037
Albany, NY
12203

Website

http://www.steffens-scleroderma.org/

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09/07/2026

09/03/2026

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08/25/2026

08/20/2026

08/20/2026

08/07/2026

08/06/2026

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07/31/2026

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