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.

06/01/2026

𝗝𝘂𝗻𝗲 𝗶𝘀 𝗦𝗰𝗹𝗲𝗿𝗼𝗱𝗲𝗿𝗺𝗮 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵.

For 10 years, we have worked to expand 𝗮𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀, 𝗲𝗱𝘂𝗰𝗮𝘁𝗶𝗼𝗻, 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 and 𝘀𝘂𝗽𝗽𝗼𝗿𝘁 for people affected by scleroderma and Degos disease.

Awareness grows when more people understand these rare diseases and the impact they have on patients and families.

𝙒𝙝𝙖𝙩’𝙨 𝙤𝙣𝙚 𝙩𝙝𝙞𝙣𝙜 𝙮𝙤𝙪 𝙬𝙞𝙨𝙝 𝙢𝙤𝙧𝙚 𝙥𝙚𝙤𝙥𝙡𝙚 𝙠𝙣𝙚𝙬?

Comment below, share this post to help expand awareness and follow along throughout June.

05/25/2026

On Memorial Day, we pause with gratitude.

We remember the men and women who gave their lives in service to our country, and we hold their families and loved ones close in our thoughts.

Today is a day for reflection, remembrance and appreciation for the courage and sacrifice that make so much possible.

From all of us at the Steffens Scleroderma and Degos Disease Foundation, we wish you a meaningful Memorial Day.

05/20/2026

𝗔 𝘀𝘂𝗺𝗺𝗲𝗿 𝗮𝗳𝘁𝗲𝗿𝗻𝗼𝗼𝗻 𝗼𝗻 𝘁𝗵𝗲 𝗛𝘂𝗱𝘀𝗼𝗻.

Good food. Cold drinks. Beautiful views. A community that cares.

Join us 𝗦𝘂𝗻𝗱𝗮𝘆, 𝗝𝘂𝗹𝘆 𝟮𝟲 for 𝘾𝙧𝙪𝙞𝙨𝙚 𝙛𝙤𝙧 𝙖 𝘾𝙪𝙧𝙚, a special fundraiser supporting our work to advance education, awareness and hope for patients and families.

It’s more than a boat ride. It’s a chance to gather, give back and help move the mission forward.

Bring a friend. Make it an afternoon. Come aboard for a cause that matters.

𝗚𝗲𝘁 𝘆𝗼𝘂𝗿 𝘁𝗶𝗰𝗸𝗲𝘁𝘀 𝘁𝗼𝗱𝗮𝘆: https://tinyurl.com/mwt4x8v4

05/11/2026

A summer afternoon. A Hudson River cruise. A chance to do something good while enjoying a splendid view.

𝗝𝗼𝗶𝗻 𝘂𝘀 𝗦𝘂𝗻𝗱𝗮𝘆, 𝗝𝘂𝗹𝘆 𝟮𝟲 for the 2026 𝘾𝙧𝙪𝙞𝙨𝙚 𝙛𝙤𝙧 𝙖 𝘾𝙪𝙧𝙚, a special fundraiser supporting education and awareness for scleroderma and Degos disease.

We’re grateful to Dutch Apple Cruises for making this event possible in memory of Captain Lou Renna. Every ticket purchased helps move our mission forward for patients, families and the people who care for them.

Come aboard for a beautiful afternoon with purpose.

𝗣𝘂𝗿𝗰𝗵𝗮𝘀𝗲 𝘁𝗶𝗰𝗸𝗲𝘁𝘀 𝗵𝗲𝗿𝗲:
https://www.dutchapplecruises.com/public-cruise-calendar

Scroll down the page to find our event.

05/10/2026

Mother’s Day can be beautiful, tender, complicated or quiet.

Whatever this day brings, we hope you feel seen, supported and gently reminded that you don’t have to carry it alone.

With care from all of us.

05/06/2026

Today we celebrate 𝗡𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗡𝘂𝗿𝘀𝗲𝘀 𝗗𝗮𝘆 and the start of National Nurses Week.

The celebration continues through May 12, the birthday of Florence Nightingale.

For people living with complex and rare diseases like scleroderma and Degos disease, nurses often play a critical role.

They listen closely, explain what’s happening, help patients navigate care and offer steady support during uncertain moments.

Their work can be clinical, emotional and deeply human, often all at once. To every nurse who helps patients feel seen, heard and cared for: 𝙩𝙝𝙖𝙣𝙠 𝙮𝙤𝙪!

𝗧𝗲𝗹𝗹 𝘂𝘀 𝗶𝗻 𝘁𝗵𝗲 𝗰𝗼𝗺𝗺𝗲𝗻𝘁𝘀: 𝗪𝗵𝗮𝘁 𝗱𝗼 𝘆𝗼𝘂𝗿 𝗻𝘂𝗿𝘀𝗲𝘀 𝗺𝗲𝗮𝗻 𝘁𝗼 𝘆𝗼𝘂?

05/04/2026

The Scleroderma Foundation of California’s latest 𝙎𝙘𝙡𝙚𝙧𝙤‑𝙎𝙪𝙣 𝙋𝙤𝙙𝙘𝙖𝙨𝙩 bursts with energy and insight.

𝗗𝗿. 𝗟𝗲𝗲 𝗦𝗵𝗮𝗽𝗶𝗿𝗼 and 𝗔𝗺𝘆 𝗚𝗶𝗲𝘁𝘇𝗲𝗻 share how the Steffens Scleroderma and Degos Disease Foundation is driving rare disease progress forward.

Their conversation highlights the research, education and patient‑driven leadership that’s changing what’s possible for people living with scleroderma and Degos disease.

Tune in today and see how your support helps turn hope into action.

𝗣𝗼𝗱𝗰𝗮𝘀𝘁 𝗟𝗶𝗻𝗸: https://youtu.be/wVRr9ixT8Ds?si=3usWO1ao35SVSmkV

04/22/2026

𝗦𝗼𝗺𝗲 𝗹𝗲𝘀𝘀𝗼𝗻𝘀 𝗱𝗼𝗻’𝘁 𝗰𝗼𝗺𝗲 𝗳𝗿𝗼𝗺 𝗮 𝗹𝗲𝗰𝘁𝘂𝗿𝗲.

Our 𝗜𝗻𝘁𝗲𝗿𝗽𝗿𝗼𝗳𝗲𝘀𝘀𝗶𝗼𝗻𝗮𝗹 𝗘𝗱𝘂𝗰𝗮𝘁𝗶𝗼𝗻 (𝗜𝗣𝗘) program brings future healthcare professionals into real conversations with people living with scleroderma, guided by up to 𝟱𝟬 𝗽𝗮𝘁𝗶𝗲𝗻𝘁 𝗲𝗱𝘂𝗰𝗮𝘁𝗼𝗿𝘀.

What makes our IPE program unique is how it helps students understand scleroderma better while building clinical reasoning skills for rare and ultra-rare disease care.

This year’s IPE took place on April 6, and we’re excited to share more in the weeks ahead. Until then, explore the program and stay connected by signing up for our quarterly newsletter.

𝗟𝗲𝗮𝗿𝗻 𝗺𝗼𝗿𝗲: https://www.steffens-scleroderma.org/ipe
𝗦𝘂𝗯𝘀𝗰𝗿𝗶𝗯𝗲: https://www.steffens-scleroderma.org/news

04/21/2026

𝐁𝐢𝐠 𝐜𝐨𝐧𝐯𝐞𝐫𝐬𝐚𝐭𝐢𝐨𝐧𝐬. 𝐓𝐫𝐮𝐬𝐭𝐞𝐝 𝐯𝐨𝐢𝐜𝐞𝐬. 𝐑𝐞𝐚𝐥 𝐢𝐦𝐩𝐚𝐜𝐭.

At the 16th Amy K. Parrish Scleroderma Patient Education Conference, patients, clinicians and advocates came together for a day of insight, support and connection.

We were especially proud to see two women from our foundation’s leadership at the center of the day.

𝐃𝐫. 𝐉𝐞𝐬𝐬𝐢𝐜𝐚 𝐅𝐚𝐫𝐫𝐞𝐥𝐥, 𝐏𝐡𝐚𝐫𝐦𝐃, one of our medical advisors and a nationally recognized expert in rheumatology pharmacy, delivered the keynote and shared practical guidance on navigating scleroderma medications with confidence.

𝐃𝐫. 𝐊𝐚𝐫𝐞𝐧 𝐊𝐞𝐦𝐩𝐞𝐫, 𝐌𝐒𝐏𝐇, 𝐏𝐡𝐃, longtime advocate and member of our board, helped attendees map their healthcare team, a critical step in managing a complex condition.

Explore the leadership behind this work and learn more about Dr. Farrell and Dr. Kemper on our 𝐋𝐞𝐚𝐝𝐞𝐫𝐬𝐡𝐢𝐩 𝐩𝐚𝐠𝐞: https://www.steffens-scleroderma.org/leadership

Their expertise and commitment continue to inform, empower and strengthen our community. 𝐑𝐞𝐚𝐝 𝐭𝐡𝐢𝐬 𝐬𝐭𝐨𝐫𝐲 𝐚𝐧𝐝 𝐞𝐱𝐩𝐥𝐨𝐫𝐞 𝐭𝐡𝐞 𝐟𝐮𝐥𝐥 𝐌𝐚𝐫𝐜𝐡 𝐢𝐬𝐬𝐮𝐞:
https://www.steffens-scleroderma.org/news

04/17/2026

𝗢𝗻𝗲 𝘃𝗼𝗶𝗰𝗲 𝗶𝘀 𝗮 𝘄𝗵𝗶𝘀𝗽𝗲𝗿. 𝗢𝗡𝗘 𝗧𝗛𝗢𝗨𝗦𝗔𝗡𝗗 𝗶𝘀 𝗮 𝗥𝗢𝗔𝗥!

We’re closing in on 𝟭,𝟬𝟬𝟬 𝗳𝗼𝗹𝗹𝗼𝘄𝗲𝗿𝘀.

This milestone means more people learning about scleroderma and Degos disease. It also means more lived experiences shared and more people standing with this community.

Follow us for real stories, trusted education and research shaping the future of rare disease care. Help push this movement forward.

𝗙𝗼𝗹𝗹𝗼𝘄 our page and 𝗶𝗻𝘃𝗶𝘁𝗲 someone in your circle to add their voice.

Address

P. O. Box 38037
Albany, NY
12203

Website

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

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