Greater Washington DC Scleroderma Foundation

06/03/2026

What does Scleroderma Awareness Month really mean?

Is it just wearing teal? Posting on social media? Attending an event?

For advocate Monika "Mighty Mo" Hilton, awareness means much more. It means sharing your story, educating others, asking for support, raising funds, building community, and making sure people living with scleroderma are seen and heard.

In our newest blog, Mo shares her no-nonsense perspective on why awareness matters, how she secured multiple proclamations recognizing June as Scleroderma Awareness Month, and simple ways YOU can get involved.

https://www.stopscleroderma.org/post/can-t-stop-won-t-stop-mighty-mo-s-mission-for-scleroderma-awareness-month

05/27/2026

Hey DC! Feeling alone with scleroderma is tough, but you don’t have to face it by yourself. That’s exactly what our Greater Washington DC support group is all about. Join us TONIGHT at 6 pm EST for a warm, uplifting meeting where we’ll share experiences, celebrate victories, tackle challenges together, and talk about how we can make an impact during June Scleroderma Awareness Month. Whether you want to meet other warriors nearby, learn about advocacy, share your ideas, or just listen and feel understood, there is a place for you here. The more of us who show up, the stronger and more welcoming our community becomes. We can’t wait to see you tonight and sign up at www.stopscleroderma.org/support.

05/19/2026

We’re in Washington, D.C., with the Coalition of Skin Diseases to advocate for meaningful change for the skin disease community. Scleroderma advocates traveled from across the country to participate in the Coalition of Skin Diseases Capitol Hill Day. After attending a full day of training and connection on Monday, the advocates hit the hill today to:

• Meet with congressional leaders
• Rally on Capitol Hill
• Push for real solutions for patients and families

Our goals:
• Urge Congress to pass the and
• Call for robust to support life-saving skin disease research
• Encourage Members of Congress to join the Congressional Skin Disease Caucus to address the growing health, economic, and social burdens of dermatologic conditions

Join us by taking action! Email your Senators and Representative using this form here: https://skincoalition.org/take-action/ #/12

05/11/2026

Early bird tickets are now on sale for Cooking Up a Cure! Save $40 on General Admission tickets when you purchase by May 22. Join us September 24 at Theater on the Lake in Chicago where you'll indulge in over 40 gourmet food and beverage stations! By attending, you’ll help fund scleroderma research and provide support to those living with scleroderma. Get ready for the ultimate culinary experience while supporting a great cause. To get tickets and a sneak peek at the amazing lineup, head to www.stopscleroderma.org/cooking-up-a-cure

04/22/2026

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 sheet.

04/17/2026

Members of the Scleroderma Foundation of Greater Chicago community are heading to the Fly-In in Washington, D.C., joining patient advocates, industry leaders, and aligned organizations to speak directly with legislators about the urgent needs of the 84 million Americans living with skin diseases.

This fly-in is about one thing: amplifying patient voices where decisions are made.
Across the U.S., skin diseases affect more than 1 in 4 Americans, yet federal investment in research has not kept pace.

Our advocacy priorities include:
• Increased, sustained funding for NIH and NIAMS research
• Support for CDC Chronic Disease education and awareness programs
• Ending harmful “fail-first” step therapy practices that delay care
• Fixing co-pay accumulator policies so patient assistance counts toward out-of-pocket costs
• Strengthening PBM transparency and reform to improve access and affordability
When communities come together, policy shifts. When patients speak, systems listen. When we show up together, we are impossible to ignore.
If you’ve ever wondered whether your story matters in advocacy, it does. These opportunities are for YOU. Step forward, raise your voice, and help shape change. Learn more about joining our advocacy team: https://www.stopscleroderma.org/advocacy

04/07/2026

do you become your own best advocate when it comes to managing scleroderma? Our upcoming conference offers many opportunities to learn ways in which you can advocate for yourself. Explore these topics and more.

Finding Strength & Resilience in the Face of Adversity: Gain real-life advice during this panel discussion from others who have lived experience and understand the importance of advocating for yourself.

Scleroderma 101: Learn how to navigate life with scleroderma and how best to work with your doctors.

Scleroderma and Oral Health: Practical advice for how you can work with your dentist to make sure you receive the best care.

Chair Yoga for Scleroderma: Exercise is one way you can take control of your health and show up for yourself everyday.

Achieving Wellness Through Art Therapy: Art is a powerful tool with a range of benefits such as helping with pain management, alleviating discomfort, and fostering emotional and physical support.

Scleroderma and Nutrition: Learn insights into the role of nutrition in managing scleroderma, allowing you to optimize your dietary choices and improve scleroderma symptoms.

Learn about all these topics and more at www.stopscleroderma.org/springconference

03/26/2026

Are you experiencing symptoms like acid reflux, a slow emptying stomach, and difficulty swallowing? Then join us for an informative presentation by Ni**od Deiss-Yehiely, MD on esophageal symptoms and scleroderma. Dr. Deiss-Yehiely will discuss advanced medications such as PCABs and prokinetics, managing related issues like SIBO, and when surgery might be considered. This session is designed to empower patients with knowledge, offering a clearer path to managing these complex symptoms and improving daily life. Ni**od Deiss-Yehiely, MD, is a dedicated gastroenterologist, managing patients with general GI complaints and specializing in the management of swallowing disorders and other esophagus conditions. He takes time to listen, answer questions, and provide comprehensive care that empowers patients to take an active role in managing their conditions. Register for FREE and learn more at: www.stopscleroderma.org/springconference

03/26/2026

Our conferences are all about meaningful connections! Join us April 24-25 in Oak Brook, IL as our community comes together for an impactful weekend. Some of the most powerful moments and interactions happen over breakfast, during a break or at a networking event. Meet others who truly understand your journey as we discuss our challenges and celebrate our victories. To learn more and register for free, head to www.stopscleroderma.org/springconference.

03/26/2026