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.

๐“๐ฐ๐จ ๐ฎ๐ฉ๐œ๐จ๐ฆ๐ข๐ง๐  ๐ ๐š๐ญ๐ก๐ž๐ซ๐ข๐ง๐ ๐ฌ. ๐Ž๐ง๐ž ๐ฌ๐ก๐š๐ซ๐ž๐ ๐œ๐จ๐ฆ๐ฆ๐ข๐ญ๐ฆ๐ž๐ง๐ญ.Join us on ๐…๐ž๐›๐ซ๐ฎ๐š๐ซ๐ฒ ๐Ÿ๐Ÿ• and ๐Œ๐š๐ซ๐œ๐ก ๐Ÿ to raise awareness of rare disease, st...
01/07/2026

๐“๐ฐ๐จ ๐ฎ๐ฉ๐œ๐จ๐ฆ๐ข๐ง๐  ๐ ๐š๐ญ๐ก๐ž๐ซ๐ข๐ง๐ ๐ฌ. ๐Ž๐ง๐ž ๐ฌ๐ก๐š๐ซ๐ž๐ ๐œ๐จ๐ฆ๐ฆ๐ข๐ญ๐ฆ๐ž๐ง๐ญ.

Join us on ๐…๐ž๐›๐ซ๐ฎ๐š๐ซ๐ฒ ๐Ÿ๐Ÿ• and ๐Œ๐š๐ซ๐œ๐ก ๐Ÿ to raise awareness of rare disease, strengthen community connections and turn awareness into meaningful support for those affected by scleroderma and related conditions.

๐„๐ฏ๐ž๐ง๐ญ ๐๐ž๐ญ๐š๐ข๐ฅ๐ฌ, ๐ฅ๐จ๐œ๐š๐ญ๐ข๐จ๐ง๐ฌ ๐š๐ง๐ ๐ฎ๐ฉ๐๐š๐ญ๐ž๐ฌ ๐ฐ๐ข๐ฅ๐ฅ ๐›๐ž ๐ฉ๐จ๐ฌ๐ญ๐ž๐ ๐จ๐ง ๐จ๐ฎ๐ซ ๐ฐ๐ž๐›๐ฌ๐ข๐ญ๐ž ๐ฌ๐จ๐จ๐ง.
https://www.steffens-scleroderma.org/events

Invite friends and family to follow our page and help grow a community committed to awareness and progress.

Awareness doesnโ€™t spread on its own.It moves through people, conversations and shared moments. For rare diseases, that m...
01/06/2026

Awareness doesnโ€™t spread on its own.

It moves through people, conversations and shared moments. For rare diseases, that movement matters.

Earlier understanding can lead to earlier recognition, better care and stronger support for patients and families.

Today, you can help that progress continue with one simple step. Invite a friend, a colleague or a family member to follow our page.

As we step into 2026, weโ€™re grateful for this community and hopeful about whatโ€™s ahead. Moving forward together makes al...
01/03/2026

As we step into 2026, weโ€™re grateful for this community and hopeful about whatโ€™s ahead. Moving forward together makes all the difference.

Every conversation matters. Every shared experience helps. Every act of support strengthens the work in front of us.

The path isnโ€™t always easy, yet itโ€™s meaningful because weโ€™re walking it side by side.

Thank you for being part of this work. Weโ€™re looking ahead with purpose, resolve and hope.

Hereโ€™s to a fresh start in 2026!We wish you comfort, connection and moments of light that carry you through the year. Gr...
01/01/2026

Hereโ€™s to a fresh start in 2026!

We wish you comfort, connection and moments of light that carry you through the year.

Grateful to be walking this path together.

Weโ€™re closing out the year with deep gratitude and a simple ask.If youโ€™ve been meaning to make a year-end gift, thereโ€™s ...
12/31/2025

Weโ€™re closing out the year with deep gratitude and a simple ask.
If youโ€™ve been meaning to make a year-end gift, thereโ€™s still time.

Your ๐ฌ๐ฎ๐ฉ๐ฉ๐จ๐ซ๐ญ ๐ก๐ž๐ฅ๐ฉ๐ฌ ๐ฎ๐ฌ ๐ซ๐ž๐š๐œ๐ก ๐ฆ๐จ๐ซ๐ž ๐ฉ๐ž๐จ๐ฉ๐ฅ๐ž affected by scleroderma and Degos disease with education, connection and hope.

Scan the ๐๐‘ ๐œ๐จ๐๐ž, give via ๐•๐ž๐ง๐ฆ๐จ @๐’๐ญ๐ž๐Ÿ๐Ÿ๐ž๐ง๐ฌ-๐’๐œ๐ฅ๐ž๐ซ๐จ๐๐ž๐ซ๐ฆ๐š or online:
https://www.paypal.com/donate/?hosted_button_id=CFF8BP5UB8PYJ

๐‘ป๐’‰๐’‚๐’๐’Œ ๐’š๐’๐’– ๐’‡๐’๐’“ ๐’”๐’•๐’‚๐’๐’…๐’Š๐’๐’ˆ ๐’˜๐’Š๐’•๐’‰ ๐’–๐’” ๐’‚๐’๐’… ๐’Ž๐’‚๐’Œ๐’Š๐’๐’ˆ ๐’•๐’‰๐’Š๐’” ๐’˜๐’๐’“๐’Œ ๐’‘๐’๐’”๐’”๐’Š๐’ƒ๐’๐’†.

12/30/2025

Our ๐ƒ๐ž๐œ๐ž๐ฆ๐›๐ž๐ซ ๐Ÿ๐ŸŽ๐Ÿ๐Ÿ“ ๐ง๐ž๐ฐ๐ฌ๐ฅ๐ž๐ญ๐ญ๐ž๐ซ is out, and itโ€™s a good one.

Meet the newest voice shaping scleroderma research and the coordinator behind our global Degos network.

Ever wonder how a rare disease website reaches 11 countries? This issue answers that question and shows how far our reach has grown this year.

Itโ€™s full of stories that show how much momentum and heart this community is carrying into the new year.

Open it by using the QR code or visiting our website: https://tinyurl.com/65urtkh5

Want future newsletters delivered straight to your inbox?
๐’๐ข๐ ๐ง ๐ฎ๐ฉ ๐ก๐ž๐ซ๐ž: https://www.steffens-scleroderma.org/news

Weโ€™re down to the final hours of the year, and ๐ฒ๐จ๐ฎ๐ซ ๐ฌ๐ฎ๐ฉ๐ฉ๐จ๐ซ๐ญ ๐œ๐š๐ง ๐ฆ๐š๐ค๐ž ๐š๐ง ๐ข๐ฆ๐ฆ๐ž๐๐ข๐š๐ญ๐ž ๐ข๐ฆ๐ฉ๐š๐œ๐ญ.Every gift helps move education...
12/29/2025

Weโ€™re down to the final hours of the year, and ๐ฒ๐จ๐ฎ๐ซ ๐ฌ๐ฎ๐ฉ๐ฉ๐จ๐ซ๐ญ ๐œ๐š๐ง ๐ฆ๐š๐ค๐ž ๐š๐ง ๐ข๐ฆ๐ฆ๐ž๐๐ข๐š๐ญ๐ž ๐ข๐ฆ๐ฉ๐š๐œ๐ญ.

Every gift helps move education, awareness and advocacy forward for people living with scleroderma and Degos.

If youโ€™re able, please use the link to make your year-end contribution. Your action truly matters.

๐ƒ๐จ๐ง๐š๐ญ๐ž: https://www.paypal.com/donate/?hosted_button_id=CFF8BP5UB8PYJ

As ๐Š๐ฐ๐š๐ง๐ณ๐š๐š continues, we honor the principles that shape our mission and strengthen our community.๐‚๐จ๐จ๐ฉ๐ž๐ซ๐š๐ญ๐ข๐ฏ๐ž ๐„๐œ๐จ๐ง๐จ๐ฆ๐ข๐œ๐ฌ:...
12/28/2025

As ๐Š๐ฐ๐š๐ง๐ณ๐š๐š continues, we honor the principles that shape our mission and strengthen our community.

๐‚๐จ๐จ๐ฉ๐ž๐ซ๐š๐ญ๐ข๐ฏ๐ž ๐„๐œ๐จ๐ง๐จ๐ฆ๐ข๐œ๐ฌ: Sharing your experience expands our circle of support.
๐๐ฎ๐ซ๐ฉ๐จ๐ฌ๐ž: Your voice strengthens our mission.
๐‚๐ซ๐ž๐š๐ญ๐ข๐ฏ๐ข๐ญ๐ฒ: Tell your story and inspire someone today.
๐…๐š๐ข๐ญ๐ก: Offer a message of hope to someone who needs it.

Share a thought inspired by one of these principles and help strengthen our community.

As we celebrate ๐Š๐ฐ๐š๐ง๐ณ๐š๐š, we honor the principles that guide our mission and support our community.๐”๐ง๐ข๐ญ๐ฒ: Your voice help...
12/26/2025

As we celebrate ๐Š๐ฐ๐š๐ง๐ณ๐š๐š, we honor the principles that guide our mission and support our community.

๐”๐ง๐ข๐ญ๐ฒ: Your voice helps bring us together.
๐’๐ž๐ฅ๐Ÿ ๐ƒ๐ž๐ญ๐ž๐ซ๐ฆ๐ข๐ง๐š๐ญ๐ข๐จ๐ง: Your story helps shape who we are.
๐‚๐จ๐ฅ๐ฅ๐ž๐œ๐ญ๐ข๐ฏ๐ž ๐–๐จ๐ซ๐ค & ๐‘๐ž๐ฌ๐ฉ๐จ๐ง๐ฌ๐ข๐›๐ข๐ฅ๐ข๐ญ๐ฒ: We lift each other up, one insight at a time.

Share one thing that helps others better understand life with scleroderma. Your words can make a real difference.

๐“œ๐“ฎ๐“ป๐“ป๐”‚ ๐“’๐“ฑ๐“ป๐“ฒ๐“ผ๐“ฝ๐“ถ๐“ช๐“ผ!Wishing you a season filled with warmth, hope and moments that matter.Thank you for supporting research,...
12/25/2025

๐“œ๐“ฎ๐“ป๐“ป๐”‚ ๐“’๐“ฑ๐“ป๐“ฒ๐“ผ๐“ฝ๐“ถ๐“ช๐“ผ!

Wishing you a season filled with warmth, hope and moments that matter.

Thank you for supporting research, awareness and collaboration that help patients and families find answers, care and hope.

๐–๐ก๐š๐ญ ๐›๐ซ๐จ๐ฎ๐ ๐ก๐ญ ๐ฒ๐จ๐ฎ ๐ฃ๐จ๐ฒ ๐ญ๐จ๐๐š๐ฒ? Share a moment with us in the comments.

When family or friends ask how youโ€™re doing or why youโ€™re taking a break, it may be an ideal opportunity to connect. A q...
12/24/2025

When family or friends ask how youโ€™re doing or why youโ€™re taking a break, it may be an ideal opportunity to connect.

A quick explanation may be the best way to help them understand how to show up for you.

These small conversations widen the circle of people who truly "get" scleroderma.

Help us grow this community of support.

๐‘พ๐’‰๐’‚๐’• ๐’Š๐’” ๐’๐’๐’† ๐’•๐’‰๐’Š๐’๐’ˆ ๐’š๐’๐’– ๐’˜๐’Š๐’”๐’‰ ๐’š๐’๐’–๐’“ ๐’‡๐’“๐’Š๐’†๐’๐’…๐’” ๐’‚๐’๐’… ๐’‡๐’‚๐’Ž๐’Š๐’๐’š ๐’–๐’๐’…๐’†๐’“๐’”๐’•๐’๐’๐’… ๐’‚๐’ƒ๐’๐’–๐’• ๐’๐’Š๐’—๐’Š๐’๐’ˆ ๐’˜๐’Š๐’•๐’‰ ๐’”๐’„๐’๐’†๐’“๐’๐’…๐’†๐’“๐’Ž๐’‚?

๐’๐ก๐š๐ซ๐ž ๐ฒ๐จ๐ฎ๐ซ ๐ญ๐ก๐จ๐ฎ๐ ๐ก๐ญ๐ฌ ๐ข๐ง ๐ญ๐ก๐ž ๐œ๐จ๐ฆ๐ฆ๐ž๐ง๐ญ๐ฌ:

The holiday season can be a whirlwind, and self care is a precious gift to yourself. ๐˜ฝ๐™ง๐™š๐™–๐™ฉ๐™๐™š, ๐™ง๐™š๐™จ๐™ฉ ๐™–๐™ฃ๐™™ ๐™ง๐™š๐™˜๐™๐™–๐™ง๐™œ๐™š.Celebrat...
12/21/2025

The holiday season can be a whirlwind, and self care is a precious gift to yourself.

๐˜ฝ๐™ง๐™š๐™–๐™ฉ๐™๐™š, ๐™ง๐™š๐™จ๐™ฉ ๐™–๐™ฃ๐™™ ๐™ง๐™š๐™˜๐™๐™–๐™ง๐™œ๐™š.

Celebrate your resilience and find warmth in our community. You are not alone.

Address

P. O. Box 38037
Albany, NY
12203

Website

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