As the year draws to a close and the Winter Solstice approaches, Arthritis Consumer Experts (ACE) finds itself looking back over a quarter century of meaningful service to people living with arthritis, its remarkable relationships, and inspiring progress to change arthritis. This month, ACE celebrates its 25th anniversary—a milestone that prompts both gratitude for what we’ve achieved together, and renewed determination as we look to the future of arthritis.
It’s hard to believe that what began 25 years ago as a small, dedicated effort to bring people the support and information they needed, but could not find, has grown into a community of more than 50,000 members and the largest social media network focussed solely on arthritis.
We are of, by, for, and with people living with all forms of arthritis, and our mission continues to be guided by your experiences and driven by your voices.
Over the past 25 years, ACE has been at the forefront of patient engagement—long before that term became a common talking point in healthcare conversations. We’ve led workshops across Canada, stood shoulder-to-shoulder with researchers and clinicians in working groups, led consultations with community-based rheumatologists, presented abstracts at medical conferences, and sat through policymaking sessions with federal, provincial and territorial governments. Through it all, we stayed focussed on our core principle: People with arthritis must share a leading role in shaping research priorities, care practices, and health policy.
We have been fortunate to meet so many amazing people with arthritis, both in person and on-line. Because we live with arthritis, too, the ACE team understands the burden the disease imposes on people’s lives. It’s that understanding that drives us to create and run information and education programs and tools that truly help people. We are humbled and proud to be part of the ACE community that spans the country, comes from myriad cultural backgrounds and speaks in many languages. Every morning, our skilled team meets to talk about how we can better welcome people into our world to ensure that they can be seen, heard and supported.
We hope the impact of our work is felt by every person who connects with ACE and finds a new sense of community, learns something essential about their disease, or discovers a resource that makes their own patient journey easier.
Another important area of our work has been the pioneering of consumer and patient participation models and strategies that are now embedded in arthritis research and policy-making processes. Because of this early work, hundreds of patients today serve on advisory boards, contribute their lived experience to research projects, and provide critical input that helps shape government healthcare policies. It’s deeply gratifying to know that the patient voices ACE has championed for decades are now recognized as integral to decision-making processes at all levels of arthritis care policymaking.
After our first 25 years, we also reflect on the life-changing progress made in treatments and therapies for various forms of autoimmune arthritis and remind ourselves and others that can “make change happen” that significant challenges persist. While many therapies have transformed lives, not everyone benefits from them equally. Some individuals do not respond as hoped, while others face obstacles in accessing or receiving reimbursement for these potentially life-saving treatments. Furthermore, thousands grapple with non-medication aspects of their care—mental health struggles, job disruption, sleep disturbances, relationship challenges—areas where support is still sorely needed. ACE remains committed to standing alongside you as you navigate these issues and advocate for comprehensive, accessible, and compassionate care.
As we look ahead to 2025 and beyond, we do so with you, the person with arthritis, in our hearts and minds. For the last 25 years, you have trusted us with your stories, challenges, and triumphs. Your experiences have guided our efforts, informed our advocacy programs, and inspired us to keep improving how we provide the research-based information, education and support you need, when you need it.
This Winter Solstice, let us celebrate how far we have come together, recommit ourselves to the work still to be done, and remember that at ACE’s core is a community of people—just like you—working together to live better, do more, and win against arthritis.
From our ACE family to yours, we wish you improved health, time with your families and an abundance of love this winter and in the year ahead.
Happy Winter Solstice,
Cheryl
Cheryl Koehn,
President and person living with rheumatoid arthritis
Arthritis Consumer Experts and its team members acknowledge that they gather and work on the traditional, ancestral and unceded territory of the Coast Salish peoples - xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and Səl̓ílwətaʔ/Selilwitulh (Tsleil-Waututh) Nations.