Scleroderma Foundation of California

06/14/2026

06/13/2026

Today's volunteer spotlight is Marc Poli. Marc is an institution at our LAOC walks in La Mirada. For decades he has been there in support of the scleroderma community. whether it's laying out the walk course or handing out t-shirts and distributing lunches, Mark does it with an ill-matched passion to serve. He also works with his local Lion's Club to bring in volunteers to help run the walk smoothly. Thank you Marc for all your great work. AMillionStepsLAOC.myscleroderma.org

06/13/2026

Patient experience is expertise.

For people living with rare diseases like scleroderma and Degos disease, the daily realities, unanswered questions and moments of being heard all carry knowledge that can shape better care.

Through interprofessional education, patient educators like Amy Gietzen help future healthcare professionals learn from lived experience in a direct and meaningful way.

That kind of learning makes rare disease education more human, more connected and more responsive to the people it is meant to serve.

As we celebrate 10 years, we honor the patient voices helping guide education, awareness and the future of care.

06/12/2026

Scleroderma Awareness Month
Whether it's a walk, gala, ski-a-thon, rock concers, or pet costume contest, every dollar raised supports scleroderma education, advocacy, support and research. Donate or find out ways you can fundraise at www.myscleroderma.org

06/11/2026

Research is the key to finding a cure for scleroderma as well as finding treatments to conditions that relate to the disease. Find out about the clinical-trials happening in and around California at:
myscleroderma.org/clinical-trials

06/10/2026

Meet our Warrior Wednesday Isaiah Norris. Isaiah is 12 years old, loves soccer, playing video games, building Legos and sketching. He loves playing with his dog Kaleb. But more so, Isaiah is a Scleroderma Warrior. He battles this disease through his art, creating pieces that encourage and uplift people in the community and displaying them in galleries. Check out his story on our YouTube channel and join him at A Million Steps for Scleroderma Las Vegas on August 29 at The Meadows Mall. Register now at AmillionLV.myscleroderma.org

06/09/2026

Today we honor the caregivers who walk beside our warriors every day. We have a support groups specifically for caregivers. Find out more at https://myscleroderma.org/support-groups

06/08/2026

MYTH: Scleroderma only affects the skin.

FACT: While "scleroderma" literally means "hard skin," this rare autoimmune disease can affect much more than the skin. Scleroderma can impact the blood vessels, digestive system, lungs, heart, kidneys, muscles, and joints.

For many people living with scleroderma, the symptoms extend far beyond what others can see. Fatigue, shortness of breath, digestive complications, chronic pain, and circulation issues such as Raynaud's phenomenon can significantly affect daily life.

Because symptoms vary from person to person, no two scleroderma journeys are exactly alike. This is why awareness, early diagnosis, ongoing research, and access to specialized care are so important.

During Scleroderma Awareness Month, help us educate others about this complex disease. The more people understand scleroderma, the closer we get to earlier diagnoses, better treatments, and ultimately a cure.

Help spread awareness by sharing this post and telling someone one thing you learned about scleroderma today.

06/07/2026

Last weekend we had a meetup in Montebello, CA that focused on community and self-care with a great yoga session. Self-care is one of the most important things to remember as a scleroderma warrior as well as caregivers. Share one thing you're doing this week to care for your body and mind in the comments.

06/06/2026

Looking for support? Our community is here for you. There are in person and online support groups just for you. Find a support group near you. at myscleroderma.org/support-groups