Steffens Scleroderma Foundation

Home
United States
Albany, NY
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.

04/14/2026

𝐑𝐚𝐫𝐞 𝐨𝐰𝐧𝐞𝐝 𝐭𝐡𝐞 𝐧𝐢𝐠𝐡𝐭.

Our 𝘊𝘩𝘦𝘦𝘳𝘴 𝘵𝘰 𝘙𝘢𝘳𝘦 event on February 27 was a massive success.

Thanks to an incredible effort from patients, physicians, volunteers, sponsors and the community, 𝙬𝙚 𝙨𝙪𝙧𝙥𝙖𝙨𝙨𝙚𝙙 𝙩𝙝𝙚 $5,000 𝙢𝙖𝙧𝙠!

Together, we turned a night of awareness into a year of impact. Keep the momentum going.

Join our quarterly newsletter for updates on how these funds are moving the work forward

𝐍𝐞𝐰𝐬𝐥𝐞𝐭𝐭𝐞𝐫 𝐬𝐢𝐠𝐧-𝐮𝐩: https://www.steffens-scleroderma.org/news

04/10/2026

Those 𝐦𝐚𝐩 𝐩𝐢𝐧𝐬 tell an important story.

Degos disease may be ultra-rare, but the work to build awareness and connect expertise is global.

𝐋𝐞𝐚𝐫𝐧 𝐦𝐨𝐫𝐞 𝐚𝐭 https://www.degosdisease.org/

𝐒𝐢𝐠𝐧 𝐮𝐩 𝐟𝐨𝐫 𝐨𝐮𝐫 𝐪𝐮𝐚𝐫𝐭𝐞𝐫𝐥𝐲 𝐧𝐞𝐰𝐬𝐥𝐞𝐭𝐭𝐞𝐫 for updates on the global effort:
https://www.steffens-scleroderma.org/news

04/08/2026

This new initiative gave medical students something no textbook can: 𝐭𝐡𝐞 𝐩𝐚𝐭𝐢𝐞𝐧𝐭 𝐩𝐞𝐫𝐬𝐩𝐞𝐜𝐭𝐢𝐯𝐞.

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

Read the full story in our newsletter, and 𝐬𝐢𝐠𝐧 𝐮𝐩 𝐭𝐨𝐝𝐚𝐲 𝐭𝐨 𝐫𝐞𝐜𝐞𝐢𝐯𝐞 𝐢𝐭 𝐪𝐮𝐚𝐫𝐭𝐞𝐫𝐥𝐲: https://www.steffens-scleroderma.org/news

04/06/2026

We’re thrilled to welcome 𝐅𝐚𝐥𝐠𝐮𝐧𝐢 𝐃𝐞𝐬𝐚𝐢 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 we’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

04/04/2026

April is 𝐕𝐨𝐥𝐮𝐧𝐭𝐞𝐞𝐫 𝐀𝐩𝐩𝐫𝐞𝐜𝐢𝐚𝐭𝐢𝐨𝐧 𝐌𝐨𝐧𝐭𝐡. 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

04/03/2026

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

Last week we hosted the 𝐰𝐨𝐫𝐥𝐝’𝐬 𝐟𝐢𝐫𝐬𝐭 𝐃𝐞𝐠𝐨𝐬 𝐏𝐚𝐭𝐢𝐞𝐧𝐭 𝐄𝐝𝐮𝐜𝐚𝐭𝐢𝐨𝐧 𝐈𝐧𝐢𝐭𝐢𝐚𝐭𝐢𝐯𝐞. 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 𝐅𝐚𝐥𝐠𝐮𝐧𝐢 𝐃𝐞𝐬𝐚𝐢. 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 𝐌𝐚𝐫𝐜𝐡 𝟐𝟎𝟐𝟔 𝐍𝐞𝐰𝐬𝐥𝐞𝐭𝐭𝐞𝐫, which is filled with Rare Disease Month fundraisers, upcoming events and many other updates from across our community.

𝐒𝐭𝐚𝐲 𝐜𝐨𝐧𝐧𝐞𝐜𝐭𝐞𝐝. 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.

03/31/2026

Set sail for a great cause!

𝗦𝗮𝘃𝗲 𝘁𝗵𝗲 𝗗𝗮𝘁𝗲: 𝐒𝐮𝐧𝐝𝐚𝐲, 𝐉𝐮𝐥𝐲 𝟐𝟔, 𝟐𝟎𝟐𝟔

𝗖𝗿𝘂𝗶𝘀𝗲 𝗳𝗼𝗿 𝗮 𝗖𝘂𝗿𝗲 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! 𝗙𝘂𝗹𝗹 𝗲𝘃𝗲𝗻𝘁 𝗱𝗲𝘁𝗮𝗶𝗹𝘀 𝗮𝗿𝗲 𝗰𝗼𝗺𝗶𝗻𝗴 𝘀𝗼𝗼𝗻.

03/20/2026

𝙁𝙄𝙍𝙎𝙏 𝘿𝘼𝙔 𝙊𝙁 𝙎𝙋𝙍𝙄𝙉𝙂 🌷

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

Happy Spring to the most resilient community we know.

Keep blooming and keep going. 🌻🩵

03/17/2026

🍀 Happy St. Patrick’s Day! 🍀

Today we’re celebrating the small joys, the bright moments and the strength of the rare disease community.

Whether you’re wearing green or simply carrying a little extra hope, we’re grateful to have you with us.

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

That’s the kind of luck we believe in. 💚

03/06/2026

𝗠𝗮𝗿𝗰𝗵 𝗶𝘀 𝗔𝘂𝘁𝗼𝗶𝗺𝗺𝘂𝗻𝗲 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵, and for our community it’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.

𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗰𝗮𝗻 𝗰𝗵𝗮𝗻𝗴𝗲 𝘁𝗵𝗮𝘁. When more people recognize the signs, it can lead to earlier evaluation, better care and stronger support.

𝗪𝗮𝗻𝘁 𝗮 𝘀𝗶𝗺𝗽𝗹𝗲 𝘄𝗮𝘆 𝘁𝗼 𝗵𝗲𝗹𝗽 𝘁𝗵𝗶𝘀 𝗺𝗼𝗻𝘁𝗵? Share this post and tell one person what you wish you’d known sooner.

If you’re comfortable, add a comment: 𝙒𝙝𝙖𝙩’𝙨 𝙤𝙣𝙚 𝙩𝙝𝙞𝙣𝙜 𝙮𝙤𝙪 𝙬𝙖𝙣𝙩 𝙤𝙩𝙝𝙚𝙧𝙨 𝙩𝙤 𝙪𝙣𝙙𝙚𝙧𝙨𝙩𝙖𝙣𝙙?

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 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗗𝗮𝘆.

A special thank you to 𝗧𝗲𝗿𝗲𝘀𝗮 𝗮𝗻𝗱 𝗠𝗮𝗿𝗸 𝗦𝗹𝗮𝘆𝘁𝗼𝗻 for opening their hearts and sharing their family’s journey with Degos disease.

Their reminder to 𝙚𝙖𝙩 𝙙𝙚𝙨𝙨𝙚𝙧𝙩 𝙛𝙞𝙧𝙨𝙩, inspired by Adam’s legendary sweet tooth, is a beautiful call to savor the small joys that carry us through.

We’re grateful for every person and sponsor who helped make these events meaningful.

Address

P. O. Box 38037
Albany, NY
12203

Website

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

Alerts

Be the first to know and let us send you an email when Steffens Scleroderma Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Steffens Scleroderma Foundation:

Shortcuts

Want your practice to be the top-listed Clinic in Albany?