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.

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.

โ€œI can miss who I was and still find joy in who I am becoming.โ€Our very own Amy Geitzen recently shared a deeply persona...
12/19/2025

โ€œI can miss who I was and still find joy in who I am becoming.โ€

Our very own Amy Geitzen recently shared a deeply personal look into her life with scleroderma for Rare Revolution Magazine. Her article, "A day in the life: reconciling grief and gratitude," is a powerful reminder of the resilience required to navigate a rare disease journey.

We are so proud to have Amyโ€™s voice representing the Steffens Scleroderma Foundation and our entire community.

Read Amyโ€™s full story here: https://rarerevolutionmagazine.com/a-day-in-the-life-reconciling-grief-and-gratitude/ ๐Ÿ“–

๐‘ฏ๐’‚๐’‘๐’‘๐’š ๐‘ฏ๐’‚๐’๐’–๐’Œ๐’Œ๐’‚๐’‰!Tonight marks the beginning of Hanukkah, a celebration of resilience and dedication.Sending our warmest w...
12/14/2025

๐‘ฏ๐’‚๐’‘๐’‘๐’š ๐‘ฏ๐’‚๐’๐’–๐’Œ๐’Œ๐’‚๐’‰!

Tonight marks the beginning of Hanukkah, a celebration of resilience and dedication.

Sending our warmest wishes to all who are celebrating. May your homes be filled with light and love this season.

๐™๐™š๐™š๐™ก๐™ž๐™ฃ๐™œ ๐™ฉ๐™๐™š ๐™˜๐™๐™ž๐™ก๐™ก? โ„๏ธ Raynaud doesnโ€™t have to stop you from enjoying winter. Stay cozy and reduce flareโ€‘ups with these s...
12/12/2025

๐™๐™š๐™š๐™ก๐™ž๐™ฃ๐™œ ๐™ฉ๐™๐™š ๐™˜๐™๐™ž๐™ก๐™ก? โ„๏ธ

Raynaud doesnโ€™t have to stop you from enjoying winter. Stay cozy and reduce flareโ€‘ups with these smart strategies.

๐Ÿ‘‰ ๐˜ฟ๐™ž๐™จ๐™˜๐™ค๐™ซ๐™š๐™ง 10 ๐™˜๐™ค๐™ก๐™™โ€‘๐™ฌ๐™š๐™–๐™ฉ๐™๐™š๐™ง ๐™ฉ๐™ž๐™ฅ๐™จ ๐™›๐™ง๐™ค๐™ข ๐˜พ๐™ก๐™š๐™ซ๐™š๐™ก๐™–๐™ฃ๐™™ ๐˜พ๐™ก๐™ž๐™ฃ๐™ž๐™˜:
https://health.clevelandclinic.org/how-to-manage-raynauds-during-the-winter

๐™Ž๐™๐™–๐™ง๐™š ๐™ฉ๐™๐™ž๐™จ ๐™ฅ๐™ค๐™จ๐™ฉ ๐™ฉ๐™ค ๐™จ๐™ฅ๐™ง๐™š๐™–๐™™ ๐™–๐™ฌ๐™–๐™ง๐™š๐™ฃ๐™š๐™จ๐™จ, ๐™–๐™ฃ๐™™ ๐™ฅ๐™ก๐™š๐™–๐™จ๐™š ๐™—๐™š ๐™จ๐™ช๐™ง๐™š ๐™ฉ๐™ค ๐™ก๐™ž๐™ ๐™š & ๐™›๐™ค๐™ก๐™ก๐™ค๐™ฌ ๐™ช๐™จ!

๐“๐ก๐ž ๐ก๐จ๐ฅ๐ข๐๐š๐ฒ๐ฌ ๐œ๐š๐ง ๐›๐ž ๐ž๐ฌ๐ฉ๐ž๐œ๐ข๐š๐ฅ๐ฅ๐ฒ ๐๐ข๐Ÿ๐Ÿ๐ข๐œ๐ฎ๐ฅ๐ญ ๐ฐ๐ก๐ž๐ง ๐Ÿ๐š๐œ๐ข๐ง๐  ๐ฅ๐จ๐ฌ๐ฌ. It may be the loss of a loved one or the unwanted changes and...
12/08/2025

๐“๐ก๐ž ๐ก๐จ๐ฅ๐ข๐๐š๐ฒ๐ฌ ๐œ๐š๐ง ๐›๐ž ๐ž๐ฌ๐ฉ๐ž๐œ๐ข๐š๐ฅ๐ฅ๐ฒ ๐๐ข๐Ÿ๐Ÿ๐ข๐œ๐ฎ๐ฅ๐ญ ๐ฐ๐ก๐ž๐ง ๐Ÿ๐š๐œ๐ข๐ง๐  ๐ฅ๐จ๐ฌ๐ฌ.

It may be the loss of a loved one or the unwanted changes and limitations that come with scleroderma.

๐ˆ๐Ÿ ๐ญ๐ก๐ข๐ฌ ๐ฌ๐ž๐š๐ฌ๐จ๐ง ๐Ÿ๐ž๐ž๐ฅ๐ฌ ๐ก๐ž๐š๐ฏ๐ฒ, ๐ฉ๐ฅ๐ž๐š๐ฌ๐ž ๐ก๐จ๐ฅ๐ ๐œ๐ฅ๐จ๐ฌ๐ž:

Your grief is real.
It is okay to not feel okay.
Treat yourself with gentleness.

We send our heartfelt support and compassion to everyone in our community.
๐’€๐’๐’– ๐’‚๐’“๐’† ๐’๐’†๐’—๐’†๐’“ ๐’‚๐’๐’๐’๐’†.

๐‰๐จ๐ข๐ง ๐จ๐ฎ๐ซ ๐œ๐จ๐ฆ๐ฆ๐ฎ๐ง๐ข๐ญ๐ฒ ๐š๐ง๐ ๐ฌ๐ญ๐š๐ฒ ๐ฎ๐ฉ๐๐š๐ญ๐ž๐: https://www.steffens-scleroderma.org/news

๐”๐ง๐ฅ๐ž๐š๐ฌ๐ก ๐ญ๐ก๐ž ๐๐จ๐ฐ๐ž๐ซ ๐จ๐Ÿ ๐‘๐š๐๐ข๐œ๐š๐ฅ ๐†๐ž๐ง๐ž๐ซ๐จ๐ฌ๐ข๐ญ๐ฒ ๐ญ๐ก๐ข๐ฌ ๐†๐ข๐ฏ๐ข๐ง๐ ๐“๐ฎ๐ž๐ฌ๐๐š๐ฒ!Today, we join the global movement of , a day dedicated to r...
12/02/2025

๐”๐ง๐ฅ๐ž๐š๐ฌ๐ก ๐ญ๐ก๐ž ๐๐จ๐ฐ๐ž๐ซ ๐จ๐Ÿ ๐‘๐š๐๐ข๐œ๐š๐ฅ ๐†๐ž๐ง๐ž๐ซ๐จ๐ฌ๐ข๐ญ๐ฒ ๐ญ๐ก๐ข๐ฌ ๐†๐ข๐ฏ๐ข๐ง๐ ๐“๐ฎ๐ž๐ฌ๐๐š๐ฒ!

Today, we join the global movement of , a day dedicated to reimagining a world built upon shared humanity and generosity.

We believe that everyone has something to give and that every act of generosity counts. Whether it is funding life-saving research, supporting a patient in need or simply spreading awareness, your kindness ripples outward.

Our mission is to show up for the people we care aboutโ€”those fighting scleroderma and Degos disease. We collaborate year-round to find better treatments and, ultimately, a cure.

๐–๐ž ๐œ๐š๐งโ€™๐ญ ๐๐จ ๐ข๐ญ ๐š๐ฅ๐จ๐ง๐ž. This GivingTuesday, please consider contributing to help us continue this vital work. Let's build a future where hope is part of everyday life.

๐Ÿ‘‰ ๐๐ฅ๐ž๐š๐ฌ๐ž ๐๐จ๐ง๐š๐ญ๐ž ๐ก๐ž๐ซ๐ž:
https://www.paypal.com/donate/?hosted_button_id=CFF8BP5UB8PYJ

Thank You for Supporting the Holiday Quilt Raffle!Grateful to everyone who purchased tickets, shared our campaign and sp...
11/30/2025

Thank You for Supporting the Holiday Quilt Raffle!

Grateful to everyone who purchased tickets, shared our campaign and spread awareness, and congratulations to our raffle winners!

Your participation celebrates the beauty of these quilts while fueling research, awareness, and collaboration in the fight against scleroderma, Degos disease, and other rare conditions.

Stay involved with us by signing up for our newsletter or indicating your interest in volunteer opportunities: https://www.steffens-scleroderma.org/news

Together, weโ€™re wrapping our community in hope.

Win the Magnolia Quilt โ€” and help us break the chains of scleroderma.At 7 pm EST today, one lucky winner will take home ...
11/28/2025

Win the Magnolia Quilt โ€” and help us break the chains of scleroderma.

At 7 pm EST today, one lucky winner will take home the Magnolia Quilt โ€” a beautiful symbol of resilience, beauty and hope.

Blooming with magnolias, this quilt honors the strength of those living with scleroderma and other rare diseases. Every raffle ticket helps us fund research, raise awareness and build global partnerships to treat and cure scleroderma, Degos disease and related conditions.

๐ŸŽŸ๏ธ Enter now: https://go.rallyup.com/steffens/Campaign/Details

Let this quilt wrap someone in warmth, and let your gift wrap our community in support.

Today, we pause with gratitude.Thank you for being part of a community that chooses compassion, connection and courage โ€”...
11/27/2025

Today, we pause with gratitude.

Thank you for being part of a community that chooses compassion, connection and courage โ€” every single day.

Whether youโ€™ve shared your story, supported a loved one, donated, volunteered, or held space for hope, youโ€™ve helped us break chains and illuminate mysteries.

Your kindness fuels research, care and advocacy for those living with rare diseases.

This Thanksgiving, weโ€™re especially thankful for your heart, your voice and your belief in a future stitched with healing.

Wishing you and yours warmth, peace and moments of joy.

๐ƒ๐ซ๐ž๐š๐ฆ๐ข๐ง๐  ๐จ๐Ÿ ๐ญ๐ก๐ข๐ฌ ๐ฅ๐ž๐ฏ๐ž๐ฅ ๐จ๐Ÿ ๐œ๐จ๐ณ๐ฒ? ๐Ÿ˜ดYou could win this stunning magnolia quilt set and transform your bedroom into a peacef...
11/20/2025

๐ƒ๐ซ๐ž๐š๐ฆ๐ข๐ง๐  ๐จ๐Ÿ ๐ญ๐ก๐ข๐ฌ ๐ฅ๐ž๐ฏ๐ž๐ฅ ๐จ๐Ÿ ๐œ๐จ๐ณ๐ฒ? ๐Ÿ˜ด

You could win this stunning magnolia quilt set and transform your bedroom into a peaceful sanctuary! Makes a wonderful gift too.

Imagine curling up with a good book and a cup of tea under this beauty. ๐‘ป๐’‰๐’† ๐’”๐’๐’†๐’†๐’‘๐’Š๐’๐’ˆ ๐’Œ๐’Š๐’•๐’•๐’š ๐’Š๐’”๐’'๐’• ๐’Š๐’๐’„๐’๐’–๐’…๐’†๐’…, ๐’ƒ๐’–๐’• ๐’•๐’‰๐’† ๐’˜๐’‚๐’“๐’Ž๐’•๐’‰ ๐’Š๐’”! ๐Ÿงก

Every ticket you buy helps fund research and support for those affected by scleroderma.

๐ŸŽŸ๏ธ ๐‘๐ž๐š๐๐ฒ ๐ญ๐จ ๐ฐ๐ข๐ง ๐š๐ง๐ ๐ฆ๐š๐ค๐ž ๐š ๐๐ข๐Ÿ๐Ÿ๐ž๐ซ๐ž๐ง๐œ๐ž?


๐‚๐ฅ๐ข๐œ๐ค ๐ญ๐ก๐ž ๐ฅ๐ข๐ง๐ค ๐ญ๐จ ๐ ๐ž๐ญ ๐ฒ๐จ๐ฎ๐ซ ๐ซ๐š๐Ÿ๐Ÿ๐ฅ๐ž ๐ญ๐ข๐œ๐ค๐ž๐ญ๐ฌ ๐ญ๐จ๐๐š๐ฒ! https://go.rallyup.com/steffens/Campaign/Details

๐‘ซ๐’๐’'๐’• ๐’˜๐’‚๐’Š๐’• โ€“ ๐’•๐’‰๐’Š๐’” ๐’…๐’“๐’†๐’‚๐’Ž ๐’’๐’–๐’Š๐’๐’• ๐’…๐’†๐’”๐’†๐’“๐’—๐’†๐’” ๐’‚ ๐’‰๐’๐’Ž๐’† ๐’‡๐’Š๐’๐’๐’†๐’… ๐’˜๐’Š๐’•๐’‰ ๐’‰๐’†๐’‚๐’“๐’•!

๐๐จ๐ฏ๐ž๐ฆ๐›๐ž๐ซ ๐ˆ๐ฌ ๐‚๐š๐ซ๐ž๐ ๐ข๐ฏ๐ž๐ซ๐ฌ ๐€๐ฐ๐š๐ซ๐ž๐ง๐ž๐ฌ๐ฌ ๐Œ๐จ๐ง๐ญ๐กWe honor the millions of Americans who provide care, particularly those supporting...
11/15/2025

๐๐จ๐ฏ๐ž๐ฆ๐›๐ž๐ซ ๐ˆ๐ฌ ๐‚๐š๐ซ๐ž๐ ๐ข๐ฏ๐ž๐ซ๐ฌ ๐€๐ฐ๐š๐ซ๐ž๐ง๐ž๐ฌ๐ฌ ๐Œ๐จ๐ง๐ญ๐ก

We honor the millions of Americans who provide care, particularly those supporting loved ones battling scleroderma and Degos disease.

Caring for someone with a complex illness can bring significant emotional, physical and financial strain. Caregivers are heroes, and their dedication deserves support.

๐“๐ก๐ซ๐ž๐ž ๐–๐š๐ฒ๐ฌ ๐˜๐จ๐ฎ ๐‚๐š๐ง ๐’๐ฎ๐ฉ๐ฉ๐จ๐ซ๐ญ ๐€ ๐‚๐š๐ซ๐ž๐ ๐ข๐ฏ๐ž๐ซ:
Ask โ€œ๐‘€๐‘Ž๐‘ฆ ๐ผ ๐‘๐‘Ÿ๐‘–๐‘›๐‘” ๐‘‘๐‘–๐‘›๐‘›๐‘’๐‘Ÿ ๐‘‡๐‘ข๐‘’๐‘ ๐‘‘๐‘Ž๐‘ฆ?โ€ It can be more effective than โ€œ๐ฟ๐‘’๐‘ก ๐‘š๐‘’ ๐‘˜๐‘›๐‘œ๐‘คโ€ฆโ€
Keep inviting them! An invitation fights isolation, even if they canโ€™t attend.
A thoughtful card or simple text reminds them their efforts are seen.

๐…๐ข๐ง๐ ๐„๐ฑ๐ญ๐ž๐ซ๐ง๐š๐ฅ ๐‘๐ž๐ฌ๐จ๐ฎ๐ซ๐œ๐ž๐ฌ (support groups, education, etc.):
https://www.steffens-scleroderma.org/external-resources

๐’๐ข๐ ๐ง ๐ฎ๐ฉ ๐Ÿ๐จ๐ซ ๐Ž๐ฎ๐ซ ๐๐ž๐ฐ๐ฌ๐ฅ๐ž๐ญ๐ญ๐ž๐ซ ๐Ÿ๐จ๐ซ ๐”๐ฉ๐๐š๐ญ๐ž๐ฌ ๐š๐ง๐ ๐‚๐จ๐ง๐ง๐ž๐œ๐ญ๐ข๐จ๐ง:
https://www.steffens-scleroderma.org/news

If you are a caregiver, know that your work is seen and valued.
We stand with you. Thank you for all that you do.

๐‘พ๐’Š๐’ ๐’•๐’‰๐’† ๐‘ด๐’‚๐’“๐’—๐’†๐’๐’๐’–๐’” ๐‘ด๐’‚๐’ˆ๐’๐’๐’๐’Š๐’‚ ๐‘ธ๐’–๐’Š๐’๐’•!The magnolia flower is a symbol of ๐ฉ๐ž๐ซ๐ฌ๐ž๐ฏ๐ž๐ซ๐š๐ง๐œ๐ž and ๐ ๐ซ๐š๐œ๐žโ€”a perfect tribute to the stre...
11/15/2025

๐‘พ๐’Š๐’ ๐’•๐’‰๐’† ๐‘ด๐’‚๐’“๐’—๐’†๐’๐’๐’–๐’” ๐‘ด๐’‚๐’ˆ๐’๐’๐’๐’Š๐’‚ ๐‘ธ๐’–๐’Š๐’๐’•!

The magnolia flower is a symbol of ๐ฉ๐ž๐ซ๐ฌ๐ž๐ฏ๐ž๐ซ๐š๐ง๐œ๐ž and ๐ ๐ซ๐š๐œ๐žโ€”a perfect tribute to the strength shown by those living with scleroderma.

This beautiful magnolia quilt is the final prize in our Holiday Quilt Raffle! Imagine bringing this treasure of elegance and comfort into your home or gifting it to someone special!

๐–๐ก๐ž๐ง ๐ฒ๐จ๐ฎ ๐›๐ฎ๐ฒ ๐š ๐ญ๐ข๐œ๐ค๐ž๐ญ, ๐ฒ๐จ๐ฎ ๐๐จ ๐ญ๐ก๐ซ๐ž๐ž ๐ญ๐ก๐ข๐ง๐ ๐ฌ:

โœ… You enter to win this magnificent quilt.
โœ… You embody the essence of perseverance and grace.
โœ… You fund crucial research and vital support services.

Purchasing a raffle ticket translates into real help and real progress in the persistent fight against scleroderma. Support our mission and enter to win this magnificent quilt today!

๐๐ฎ๐ซ๐œ๐ก๐š๐ฌ๐ž ๐ซ๐š๐Ÿ๐Ÿ๐ฅ๐ž ๐ญ๐ข๐œ๐ค๐ž๐ญ๐ฌ ๐ก๐ž๐ซ๐ž: https://go.rallyup.com/steffens/Campaign/Details

Address

P. O. Box 38037
Albany, NY
12203

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