The Power of Patient Voices in Rheumatology Research
The landscape of medical research is evolving, with patient advocacy taking center stage in areas previously dominated by clinicians and scientists. This shift is particularly evident in rheumatology, where the Rheumatology Research Foundation has pioneered the Rheum Champions initiative, bringing together individuals living with rheumatic diseases to amplify their experiences and perspectives.
In a recent roundtable discussion, six remarkable advocates shared their journeys into patient advocacy, highlighting how they’re bridging gaps between personal experience and scientific advancement. These Room Champions—Chelsea, Stasha, Nya, Tanya, Jen, and Cheryl—each bring unique perspectives to the table, having navigated diagnoses ranging from rheumatoid arthritis and lupus to Hashimoto’s thyroiditis and polycystic ovarian syndrome. Their stories reveal the transformative power of community in turning personal struggles into collective progress.
For many of these advocates, their journeys began during moments of isolation. Chelsea shared how, during the COVID pandemic, a therapist encouraged her to find support groups online when in-person options weren’t available. This led her to connect with other patients on social media, eventually creating a network that became a lifeline. Similarly, Cheryl’s advocacy journey started unexpectedly when a swing dance video she created about dancing with arthritis caught the attention of the Arthritis Foundation, opening doors to speaking engagements and broader advocacy work.
What’s particularly striking is how these advocates balance vulnerability with purpose. As Cheryl, an occupational therapist diagnosed with rheumatoid arthritis, noted, “All the things I was afraid of have happened,” referring to online criticism about treatment choices. Yet she continues because “for every one negative comment, there are twenty people who say ‘I was so scared to do my first injection and then I saw your video and felt like I could do it too.'” This sentiment echoes throughout the group—a willingness to face vulnerability for the greater good.
The 2025 Investigators Meeting, hosted by the Rheumatology Research Foundation, emerges as a pivotal experience for these advocates. Unlike larger medical conferences, this gathering created an intimate space where patients, researchers, and clinicians could engage in meaningful dialogue. Nya observed that the setting allowed them “to talk to the researchers on a personal level” and “get to know the rheumatologists as people more than just physicians.” This human connection elevates the research process, ensuring that scientific pursuits remain grounded in patient realities.
What sets the Rheum Champions initiative apart is its emphasis on collaboration across different stakeholders. Tanya highlighted the foundation’s impressive track record of fiscal responsibility, placing it “in the top 0.5% of charities” with nearly 100% of donations directly supporting their stated mission. Meanwhile, Jen was struck by the enthusiasm and engagement of researchers even late in the day, describing the conference as “an antidote to hopelessness” in a field where burnout is common.
Perhaps most importantly, these advocates are expanding the definition of community in chronic illness. As Cheryl beautifully articulated, healing comes not just from discussing shared health challenges but also from connecting on entirely unrelated topics—favorite books, dietary preferences, or personal interests—that “remember that we’re human beings alongside everything.” This holistic approach to community-building strengthens both advocacy efforts and personal resilience.
For those inspired by these stories, becoming a Rheum Champion requires only completing a brief online form through the Rheumatology Research Foundation. The program continues to evolve, seeking diverse voices to help spread awareness about advances in rheumatology research and treatment options. As Jen emphasized, “It’s not about having all the answers, it’s about wanting to make a difference.”
The power of patient advocacy lies in its ability to transform individual struggles into collective progress. Through initiatives like the Rheum Champions program, the gap between clinical research and lived experience narrows, creating space for more effective treatments, better physician training, and ultimately, improved quality of life for those living with rheumatic diseases. As these six champions demonstrate, when patients lead, progress inevitably follows.
Apply to be a #RheumChampion today!
#RHEUMCHAMPION – The Rheumatology Lab
Jen Weaver:
https://www.instagram.com/gracefully_jen?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==
Cherly Crow:
Podcast Archives – Arthritis Life
Rheum to THRIVE – Arthritis Life
Tanya Freirich:
