Steffens Scleroderma Foundation

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.

This new initiative gave medical students something no textbook can: ๐ญ๐ก๐ž ๐ฉ๐š๐ญ๐ข๐ž๐ง๐ญ ๐ฉ๐ž๐ซ๐ฌ๐ฉ๐ž๐œ๐ญ๐ข๐ฏ๐ž. Hearing directly from peop...
04/08/2026

This new initiative gave medical students something no textbook can: ๐ญ๐ก๐ž ๐ฉ๐š๐ญ๐ข๐ž๐ง๐ญ ๐ฉ๐ž๐ซ๐ฌ๐ฉ๐ž๐œ๐ญ๐ข๐ฏ๐ž.

Hearing directly from people living with Degos left an immediate and lasting impression.

Read the full story in our newsletter, and ๐ฌ๐ข๐ ๐ง ๐ฎ๐ฉ ๐ญ๐จ๐๐š๐ฒ ๐ญ๐จ ๐ซ๐ž๐œ๐ž๐ข๐ฏ๐ž ๐ข๐ญ ๐ช๐ฎ๐š๐ซ๐ญ๐ž๐ซ๐ฅ๐ฒ: https://www.steffens-scleroderma.org/news

Weโ€™re thrilled to welcome ๐…๐š๐ฅ๐ ๐ฎ๐ง๐ข ๐ƒ๐ž๐ฌ๐š๐ข to our board. Her leadership, resilience and commitment to raising awareness for...
04/06/2026

Weโ€™re thrilled to welcome ๐…๐š๐ฅ๐ ๐ฎ๐ง๐ข ๐ƒ๐ž๐ฌ๐š๐ข to our board.

Her leadership, resilience and commitment to raising awareness for scleroderma bring a spark of strength that inspires everyone around her.

Falguni's story is powerful, and her voice is already making an impact. Get to know her and see why weโ€™re so excited to have her on the team.

You can read her full bio in our newest newsletter.

Sign up for our newsletter here: https://www.steffens-scleroderma.org/news

April is ๐•๐จ๐ฅ๐ฎ๐ง๐ญ๐ž๐ž๐ซ ๐€๐ฉ๐ฉ๐ซ๐ž๐œ๐ข๐š๐ญ๐ข๐จ๐ง ๐Œ๐จ๐ง๐ญ๐ก. Every day our volunteers bring heart and steady strength to this mission.Their ti...
04/04/2026

April is ๐•๐จ๐ฅ๐ฎ๐ง๐ญ๐ž๐ž๐ซ ๐€๐ฉ๐ฉ๐ซ๐ž๐œ๐ข๐š๐ญ๐ข๐จ๐ง ๐Œ๐จ๐ง๐ญ๐ก. Every day our volunteers bring heart and steady strength to this mission.

Their time and energy help us reach more families, host special events, share better information and stand with people who are living with rare and difficult diseases.

We are grateful for every person who shows up with compassion and hope.

If you feel called to be part of this work, follow the link to volunteer with us.
https://www.steffens-scleroderma.org/support-us

Our quarterly newsletter is the best way to stay connected to everything happening across our community.Last week we hos...
04/03/2026

Our quarterly newsletter is the best way to stay connected to everything happening across our community.

Last week we hosted the ๐ฐ๐จ๐ซ๐ฅ๐โ€™๐ฌ ๐Ÿ๐ข๐ซ๐ฌ๐ญ ๐ƒ๐ž๐ ๐จ๐ฌ ๐๐š๐ญ๐ข๐ž๐ง๐ญ ๐„๐๐ฎ๐œ๐š๐ญ๐ข๐จ๐ง ๐ˆ๐ง๐ข๐ญ๐ข๐š๐ญ๐ข๐ฏ๐ž. This groundbreaking program gave future dermatologists an eye opening look at Degos Disease.

Faculty at Hofstra were thrilled with the experience and have already expressed interest in hosting an expanded event next year.

We are excited to welcome new board member ๐…๐š๐ฅ๐ ๐ฎ๐ง๐ข ๐ƒ๐ž๐ฌ๐š๐ข. Her experience, perspective and passion for advocacy will strengthen our work in meaningful ways.

Learn more about her here: https://www.steffens-scleroderma.org/leadership

These are only two highlights from the ๐Œ๐š๐ซ๐œ๐ก ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ” ๐๐ž๐ฐ๐ฌ๐ฅ๐ž๐ญ๐ญ๐ž๐ซ, which is filled with Rare Disease Month fundraisers, upcoming events and many other updates from across our community.

๐’๐ญ๐š๐ฒ ๐œ๐จ๐ง๐ง๐ž๐œ๐ญ๐ž๐. Read the full newsletter and sign up to receive it:
https://www.steffens-scleroderma.org/news

If something stands out to you, we would value your perspective in the comments.

Set sail for a great cause!๐—ฆ๐—ฎ๐˜ƒ๐—ฒ ๐˜๐—ต๐—ฒ ๐——๐—ฎ๐˜๐—ฒ: ๐’๐ฎ๐ง๐๐š๐ฒ, ๐‰๐ฎ๐ฅ๐ฒ ๐Ÿ๐Ÿ”, ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ”๐—–๐—ฟ๐˜‚๐—ถ๐˜€๐—ฒ ๐—ณ๐—ผ๐—ฟ ๐—ฎ ๐—–๐˜‚๐—ฟ๐—ฒ is back to support the Steffens Sclerod...
03/31/2026

Set sail for a great cause!

๐—ฆ๐—ฎ๐˜ƒ๐—ฒ ๐˜๐—ต๐—ฒ ๐——๐—ฎ๐˜๐—ฒ: ๐’๐ฎ๐ง๐๐š๐ฒ, ๐‰๐ฎ๐ฅ๐ฒ ๐Ÿ๐Ÿ”, ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ”

๐—–๐—ฟ๐˜‚๐—ถ๐˜€๐—ฒ ๐—ณ๐—ผ๐—ฟ ๐—ฎ ๐—–๐˜‚๐—ฟ๐—ฒ is back to support the Steffens Scleroderma and Degos Disease Foundation, and we can't wait to see you there.

Share this post to encourage your friends and family to join us on the water! ๐—™๐˜‚๐—น๐—น ๐—ฒ๐˜ƒ๐—ฒ๐—ป๐˜ ๐—ฑ๐—ฒ๐˜๐—ฎ๐—ถ๐—น๐˜€ ๐—ฎ๐—ฟ๐—ฒ ๐—ฐ๐—ผ๐—บ๐—ถ๐—ป๐—ด ๐˜€๐—ผ๐—ผ๐—ป.

๐™๐™„๐™๐™Ž๐™ ๐˜ฟ๐˜ผ๐™” ๐™Š๐™ ๐™Ž๐™‹๐™๐™„๐™‰๐™‚ ๐ŸŒทSoftening the edges. Finding the light. Pushing through the cold.Happy Spring to the most resilient...
03/20/2026

๐™๐™„๐™๐™Ž๐™ ๐˜ฟ๐˜ผ๐™” ๐™Š๐™ ๐™Ž๐™‹๐™๐™„๐™‰๐™‚ ๐ŸŒท

Softening the edges.
Finding the light.
Pushing through the cold.

Happy Spring to the most resilient community we know.

Keep blooming and keep going. ๐ŸŒป๐Ÿฉต

๐Ÿ€ Happy St. Patrickโ€™s Day! ๐Ÿ€Today weโ€™re celebrating the small joys, the bright moments and the strength of the rare dise...
03/17/2026

๐Ÿ€ Happy St. Patrickโ€™s Day! ๐Ÿ€

Today weโ€™re celebrating the small joys, the bright moments and the strength of the rare disease community.

Whether youโ€™re wearing green or simply carrying a little extra hope, weโ€™re grateful to have you with us.

Your support helps bring comfort, connection and progress to families living with scleroderma and Degos disease.

Thatโ€™s the kind of luck we believe in. ๐Ÿ’š

๐— ๐—ฎ๐—ฟ๐—ฐ๐—ต ๐—ถ๐˜€ ๐—”๐˜‚๐˜๐—ผ๐—ถ๐—บ๐—บ๐˜‚๐—ป๐—ฒ ๐—”๐˜„๐—ฎ๐—ฟ๐—ฒ๐—ป๐—ฒ๐˜€๐˜€ ๐— ๐—ผ๐—ป๐˜๐—ต, and for our community itโ€™s personal.Scleroderma and Degos disease can be hard to re...
03/06/2026

๐— ๐—ฎ๐—ฟ๐—ฐ๐—ต ๐—ถ๐˜€ ๐—”๐˜‚๐˜๐—ผ๐—ถ๐—บ๐—บ๐˜‚๐—ป๐—ฒ ๐—”๐˜„๐—ฎ๐—ฟ๐—ฒ๐—ป๐—ฒ๐˜€๐˜€ ๐— ๐—ผ๐—ป๐˜๐—ต, and for our community itโ€™s personal.

Scleroderma and Degos disease can be hard to recognize. Too often, getting a proper diagnosis takes far too long.

Symptoms can seem unrelated, come and go and be easy to brush off.

๐—”๐˜„๐—ฎ๐—ฟ๐—ฒ๐—ป๐—ฒ๐˜€๐˜€ ๐—ฐ๐—ฎ๐—ป ๐—ฐ๐—ต๐—ฎ๐—ป๐—ด๐—ฒ ๐˜๐—ต๐—ฎ๐˜. When more people recognize the signs, it can lead to earlier evaluation, better care and stronger support.

๐—ช๐—ฎ๐—ป๐˜ ๐—ฎ ๐˜€๐—ถ๐—บ๐—ฝ๐—น๐—ฒ ๐˜„๐—ฎ๐˜† ๐˜๐—ผ ๐—ต๐—ฒ๐—น๐—ฝ ๐˜๐—ต๐—ถ๐˜€ ๐—บ๐—ผ๐—ป๐˜๐—ต? Share this post and tell one person what you wish youโ€™d known sooner.

If youโ€™re comfortable, add a comment: ๐™’๐™๐™–๐™ฉโ€™๐™จ ๐™ค๐™ฃ๐™š ๐™ฉ๐™๐™ž๐™ฃ๐™œ ๐™ฎ๐™ค๐™ช ๐™ฌ๐™–๐™ฃ๐™ฉ ๐™ค๐™ฉ๐™๐™š๐™ง๐™จ ๐™ฉ๐™ค ๐™ช๐™ฃ๐™™๐™š๐™ง๐™จ๐™ฉ๐™–๐™ฃ๐™™?

This past weekend reminded us what community really looks like. Thank you to everyone who showed up and shared in the sp...
03/05/2026

This past weekend reminded us what community really looks like. Thank you to everyone who showed up and shared in the spirit of ๐—ฅ๐—ฎ๐—ฟ๐—ฒ ๐——๐—ถ๐˜€๐—ฒ๐—ฎ๐˜€๐—ฒ ๐——๐—ฎ๐˜†.

A special thank you to ๐—ง๐—ฒ๐—ฟ๐—ฒ๐˜€๐—ฎ ๐—ฎ๐—ป๐—ฑ ๐— ๐—ฎ๐—ฟ๐—ธ ๐—ฆ๐—น๐—ฎ๐˜†๐˜๐—ผ๐—ป for opening their hearts and sharing their familyโ€™s journey with Degos disease.

Their reminder to ๐™š๐™–๐™ฉ ๐™™๐™š๐™จ๐™จ๐™š๐™ง๐™ฉ ๐™›๐™ž๐™ง๐™จ๐™ฉ, inspired by Adamโ€™s legendary sweet tooth, is a beautiful call to savor the small joys that carry us through.

Weโ€™re grateful for every person and sponsor who helped make these events meaningful.

๐—ง๐—ผ๐—ฑ๐—ฎ๐˜† ๐—ถ๐˜€ ๐—ฅ๐—ฎ๐—ฟ๐—ฒ ๐——๐—ถ๐˜€๐—ฒ๐—ฎ๐˜€๐—ฒ ๐——๐—ฎ๐˜†, a time to stand with the millions of people living with rare diseases and the families who wa...
02/28/2026

๐—ง๐—ผ๐—ฑ๐—ฎ๐˜† ๐—ถ๐˜€ ๐—ฅ๐—ฎ๐—ฟ๐—ฒ ๐——๐—ถ๐˜€๐—ฒ๐—ฎ๐˜€๐—ฒ ๐——๐—ฎ๐˜†, a time to stand with the millions of people living with rare diseases and the families who walk beside them.

Their strength, their uncertainty and their hope call us to pay attention and to act.

Share this message to help their stories reach people who may not know about scleroderma or Degos disease, because ๐™–๐™ฌ๐™–๐™ง๐™š๐™ฃ๐™š๐™จ๐™จ ๐™—๐™š๐™œ๐™ž๐™ฃ๐™จ ๐™ฌ๐™๐™š๐™ฃ ๐™จ๐™ค๐™ข๐™š๐™ค๐™ฃ๐™š ๐™ก๐™š๐™–๐™ง๐™ฃ๐™จ ๐™จ๐™ค๐™ข๐™š๐™ฉ๐™๐™ž๐™ฃ๐™œ ๐™ฃ๐™š๐™ฌ.

๐—”๐˜„๐—ฎ๐—ฟ๐—ฒ๐—ป๐—ฒ๐˜€๐˜€ ๐—ถ๐˜€ ๐—บ๐—ผ๐—ฟ๐—ฒ ๐˜๐—ต๐—ฎ๐—ป ๐—ฟ๐—ฒ๐—ฐ๐—ผ๐—ด๐—ป๐—ถ๐˜๐—ถ๐—ผ๐—ป. Itโ€™s the first step toward faster diagnoses, better treatments and the support so many still struggle to find.

When we choose to learn, speak up and stay engaged, we help bring rare diseases out of the shadows and into the conversations where progress begins.

๐™๐™๐™–๐™ฃ๐™  ๐™ฎ๐™ค๐™ช ๐™›๐™ค๐™ง ๐™ฉ๐™–๐™ ๐™ž๐™ฃ๐™œ ๐™– ๐™ข๐™ค๐™ข๐™š๐™ฃ๐™ฉ ๐™ฉ๐™ค ๐™จ๐™๐™ค๐™ฌ ๐™ช๐™ฅ ๐™›๐™ค๐™ง ๐™ฉ๐™๐™ž๐™จ ๐™˜๐™ค๐™ข๐™ข๐™ช๐™ฃ๐™ž๐™ฉ๐™ฎ. ๐™”๐™ค๐™ช๐™ง ๐™ซ๐™ค๐™ž๐™˜๐™š, ๐™ฎ๐™ค๐™ช๐™ง ๐™ฅ๐™ง๐™š๐™จ๐™š๐™ฃ๐™˜๐™š ๐™–๐™ฃ๐™™ ๐™ฎ๐™ค๐™ช๐™ง ๐™ฌ๐™ž๐™ก๐™ก๐™ž๐™ฃ๐™œ๐™ฃ๐™š๐™จ๐™จ ๐™ฉ๐™ค ๐™˜๐™–๐™ง๐™š ๐™ฉ๐™ง๐™ช๐™ก๐™ฎ ๐™ข๐™–๐™ฉ๐™ฉ๐™š๐™ง!

There are two meaningful ways you can stand with this community and help move this work forward:

โ€ข ๐—ฉ๐—ฒ๐—ป๐—บ๐—ผ: Scleroderma
โ€ข ๐—ข๐—ป๐—น๐—ถ๐—ป๐—ฒ: https://www.paypal.com/donate/?hostedbutton_idd=CFF8BP5UB8PYJ

๐—ช๐—ถ๐—ป๐˜๐—ฒ๐—ฟโ€™๐˜€ ๐—˜๐—ป๐—ฑ ๐—ถ๐˜€ ๐—ฆ๐˜‚๐—ป๐—ฑ๐—ฎ๐˜† ๐—ถ๐—ป ๐—ฆ๐—ฐ๐—ฟ๐—ฎ๐—ป๐˜๐—ผ๐—ป.Weโ€™re marking ๐—ฅ๐—ฎ๐—ฟ๐—ฒ ๐——๐—ถ๐˜€๐—ฒ๐—ฎ๐˜€๐—ฒ ๐——๐—ฎ๐˜† together this Sunday and showing up for the rare disea...
02/28/2026

๐—ช๐—ถ๐—ป๐˜๐—ฒ๐—ฟโ€™๐˜€ ๐—˜๐—ป๐—ฑ ๐—ถ๐˜€ ๐—ฆ๐˜‚๐—ป๐—ฑ๐—ฎ๐˜† ๐—ถ๐—ป ๐—ฆ๐—ฐ๐—ฟ๐—ฎ๐—ป๐˜๐—ผ๐—ป.

Weโ€™re marking ๐—ฅ๐—ฎ๐—ฟ๐—ฒ ๐——๐—ถ๐˜€๐—ฒ๐—ฎ๐˜€๐—ฒ ๐——๐—ฎ๐˜† together this Sunday and showing up for the rare disease community. Thereโ€™s still time to grab your spot.

๐—š๐—ฒ๐˜ ๐˜†๐—ผ๐˜‚๐—ฟ ๐˜๐—ถ๐—ฐ๐—ธ๐—ฒ๐˜๐˜€ ๐—ป๐—ผ๐˜„ and support the Steffens Scleroderma and Degos Disease Foundation and the rare disease community.

๐—ง๐—ถ๐—ฐ๐—ธ๐—ฒ๐˜๐˜€: https://www.degosdisease.org/events/winters-end

Hope to see you there!

Address

P. O. Box 38037
Albany, NY
12203

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