Greater Washington DC Scleroderma Foundation

10/13/2026

Have you seen the latest episode of Mogil’s Mobcast?

It features Advocacy Team member Monika Hilton, who was living her dream as the “cake lady” when she noticed changes in her hands and was diagnosed with systemic scleroderma.

But scleroderma didn’t stop her. Monika turned a traumatic experience into something powerful. She created the Mo Experience, a journey of advocacy and awareness.

Want to turn your story into a way to make a difference? You don’t have to be an expert to be an advocate. Email [email protected] to learn more about joining our Advocacy and Awareness Team!

https://podcasts.apple.com/us/podcast/episode-129-monika-hilton-scleroderma-warrior/id1577244121?i=1000793232582

Podcast Episode · Mogil's Mobcast-A Scleroderma Chat · October 5 · 45m

10/03/2026

“I wake up to a memo. I was never invited to give input!”

Karen's body has been holding Congressional hearings without her for more than 16 years. But behind the humor is a powerful story about diagnosis, self-advocacy, finding your voice, and realizing that surviving isn't the only goal.
Karen is sharing her story in our newest Scleroderma Truth blog, and she's inviting YOU to be part of what comes next.
Read: https://www.stopscleroderma.org/post/my-body-holds-congressional-hearings-without-me

Meet Karen in Chicago on October 17 at our complementary Patient Education Conference, where she'll lead Using Your Voice: An Interactive Self-Advocacy Workshop.

Can't make it to Chicago? Share your voice through Karen's patient, caregiver, or healthcare provider survey which are linked up in the blog post. Your insights can help shape future self-advocacy tools and resources.

Read. Share. Speak up. Be part of the conversation.

09/29/2026

“It’s like a big hug.”

That’s how Brooke describes what it feels like to connect with the scleroderma community.

Our 2026 Chicago Patient Education Conference is a chance to find that connection.

📍 Chicago, IL — Gleacher Center
📅 Saturday, October 17
🎟️ Complimentary registration + lunch included

Come learn from scleroderma experts.
Come ask questions.
Come build your self-advocacy toolkit.
Come meet people who understand.

Come for the information. Stay for the connection.

👉 Reserve your complimentary spot: stopscleroderma.org/fallconference2026

09/23/2026

Join the Greater Washington DC Support Group TONIGHT at 6 PM EST!

Whether you want to ask questions, learn about resources, get involved in advocacy, or share your ideas for growing this community, there is a place for you in this conversation.

You don’t have to have anything prepared. Just come as you are! The more voices we have, the stronger this community becomes. We hope you’ll join us TONIGHT.

To join, head to www.stopscleroderma.org/support and fill out the sign-up form.

09/23/2026

Data informs. Stories transform. Your story could be the one that sparks change.

Are you ready to share it? Learn how here: https://www.stopscleroderma.org/advocacy

09/22/2026

“Do the things that scare you. Take the next step. And know that we’re cheering for you all the way.”

Four years ago, Ronna was an active 35-year-old mom, wife, small business owner, and someone who loved to move her body. But something didn't feel right. What began as a conversation about chronic migraines led to an autoimmune workup, a diagnosis of scleroderma, and the discovery that she was also living with interstitial lung disease (ILD).

“When I got my diagnosis, so many questions ran through my head. How would my body respond to treatment? What did my future hold? How long could I continue living at 7,500 feet?”

Then, after taking time to process her diagnosis, Ronna made a decision: she wasn’t going to let fear define what came next. She was going to do the things that scared her. In the latest Scleroderma Truth blog post, Ronna shares her inspiring journey of being knocked down by a life-changing diagnosis, finding her strength again, and defying expectations as she learns to live, and run at high elevations with scleroderma and interstitial lung disease.

Read the full blog post here:
https://www.stopscleroderma.org/post/one-foot-in-front-of-the-other-a-journey-with-ssc-ild

09/16/2026

What patient? What treatment? And when?

That’s the promise of precision medicine. Our friends at the Fibrosis Foundation are hosting a special event in honor of Interstitial Lung Disease Day.

How can we move toward a future where ILD care is personalized to the patient?
Instead of a one-size-fits-all approach, researchers and clinicians are exploring how things like disease subtype, biomarkers, genetics, and other individual characteristics, could help guide treatment decisions.

The goal? The right treatment, for the right patient, at the right time. Join the discussion and learn how precision medicine could change the future of ILD care, followed by a live Q&A with an expert.

Grab your seat for the Wednesday, September 16th event here: https://pulmonaryfibrosis-org.zoom.us/webinar/register/WN_GRq3qtzNTWGdXNsZlgh8mA #/registration

09/15/2026

Thanks to ABC 7 Chicago for highlighting Cooking Up a Cure for Scleroderma in a special segment today. There’s still time to join us for this ultimate culinary experience. Watch the full segment at ABC 7 Chicago here: https://abc7chicago.com/videoClip/19832428/

There is still time to grab your tickets and join us on Thursday, September 24th at Theatre on the Lake on Chicago's beautiful lakefront.

09/08/2026

Advocacy doesn’t just change systems, it changes you.

If you’ve been quiet… unsure… waiting…This is your invitation. Your voice matters here. Join the movement: https://www.stopscleroderma.org/advocacy