05/22/2026
What a week in DC Hill Day! We are filled with gratitude for the incredible advocates who showed up, spoke out, and represented the scleroderma community with courage, passion, and determination.
Advocacy days like this are inspiring, but they are also deeply physical and emotional. They require advocates to move quickly across Capitol Hill, navigate packed schedules, sit through countless meetings, and share deeply personal stories again and again with lawmakers and staff. That takes strength.
From first-time advocates experiencing Washington, D.C. for the very first time, to young adults bravely sharing what it’s like to grow up with systemic scleroderma, every voice brought humanity, urgency, and hope into these conversations. Patients and caregivers spoke not only for themselves, but for the entire community. We are especially moved by stories like Grace’s. Diagnosed with systemic scleroderma and ILD at just 8 years old. Now standing confidently in congressional offices at 19, advocating for research funding, access to care, and policy change that could improve lives for countless others.
To every advocate who participated: thank you. Thank you for your vulnerability, your energy, your preparation, your resilience, and your willingness to keep telling your story so others may one day have better outcomes.
Would you like to join our advocacy team? There are so many ways to participate, including VIRTUALLY!
Apply here: https://www.stopscleroderma.org/advocacy
