I first got involved with the Spondylitis Association of America (SAA) when one of my daughters was diagnosed with the disease. It was a surprise. She had been a competitive athlete, so we thought her joint pain was due to overuse injuries—completely reasonable, right? But when she got to college, the athletic department’s physician took a closer look and said, “I think you have spondyloarthritis.” That moment changed everything. We were stunned. And later, when she began to experience serious flare-ups, it became even more alarming.
As a scientist, not a medical doctor, I was surprised by how little was known about the condition, even in clinical spaces. Treatment seemed to follow a frustrating pattern of trial and error. Try this medication, see if you feel better. If not, try the next one. How many different approaches would we have to go through before something finally worked? Eventually, appropriate treatment was found, but that process was eye-opening.
And there was another layer to it. For years, ankylosing spondylitis (AS) was considered a “male disease.” That perception is still out there, even among medical professionals. I can’t help but wonder how many women were overlooked, dismissed, or misdiagnosed because the symptoms didn’t fit the outdated profile.
Around the time of the diagnosis, I went to a support group. Just me. Not as a scientist or a board member, just as a mother trying to understand. And what I discovered there helped me face something I couldn’t quite acknowledge in my own daughter. Chronic, incurable illness can be hard to accept in someone you love. But meeting people who live with it and hearing how they manage their daily lives changed something in me. I learned more in that support group than I could have imagined. Practical things—like how people with AS often reorganize their kitchens so they don’t have to bend down for heavy pots—that’s something a rheumatologist isn’t going to tell you. But a support group will. That’s why I always recommend family members attend them. You learn what works, what doesn’t, and you realize you’re not alone.
Eventually, my husband and I attended an event hosted by the late SAA executive director, Laurie Savage. That’s when I first really got to know the organization in depth. We went to a couple more events and got to know some of the amazing people involved. Over time, that path led me to joining the board.
On the board, I’ve tried to bring my scientific background into the fold. I’m a biological chemist with a PhD in chemistry. I’ve always loved science. My parents never had the chance to go to college, but they bought me chemistry sets and microscopes and encouraged my curiosity. I studied, got my PhD, worked in biotech, and helped shepherd products through the FDA approval process. Eventually, I moved into philanthropy, where I spent two decades funding scientific research—not medical, but rigorous, impactful work.
One thing I learned over the years is that great scientists are rare. Lots of people have decent ideas. But brilliant people with bold, innovative thinking? They’re not so common. So one of my first major contributions to the SAA came during the selection process for the Jane Bruckel Award. That year, we had three exceptional candidates. Everyone kept saying, “Too bad we can only give one award.” And I said, “Why only one?” We had the funds. All three were worthy. So we gave three awards that year. That moment reflected a bigger shift in thinking: we need to foster—not limit—the number of researchers in our field. We’re a small organization, but even modest grants can catalyze important discoveries and help build careers. And that helps all of us.
Right now, we’re in a time of big change. Federal science policy is shifting, and research funding is uncertain. So it’s critical that SAA continues to partner with advocacy organizations, government contacts, and the research community. AS has always been somewhat overlooked. People go undiagnosed for years. We need to help change that. We need better diagnostics, better treatments, and more awareness.
Part of how we do that is by supporting good ideas and good people. We review proposals with experts, assess the soundness of the science, and consider the researcher’s qualifications and environment. But we also understand that we’re not the NIH. We’re not a government bureaucracy. We can be flexible and creative. If a proposal has flaws but a promising core, we work with the researcher to revise it. We want people to succeed and stay in the field. Many of the researchers funded by SAA often see patients by day and write grant proposals in their “spare” time, driven by passion. And passion is something you can’t buy.
Much of what I’ve funded or supported in my professional career exists at the intersection of disciplines and I’ve brought this concept to the SAA . For instance, one promising SAA-funded project aims to build connections between rheumatologists and gastroenterologists. Seems unrelated at first—joints versus digestion—but patients often show symptoms across different organ systems. Bridging those specialties can lead to better care. One thing that sets me apart, maybe, is that I’m a scientist who loves people. I love bringing people together, getting them to talk, collaborate, share perspectives. Complex conditions like spondyloarthritis require that kind of cross-talk.
In my current work, I’ve been focusing on indoor air quality. That ties back to research I did following the 2001 anthrax attacks. People spend about 90% of their time indoors—at home, at work, in schools—and the quality of that air matters. Whether it’s viruses like COVID-19 or pollutants that worsen chronic illness, clean air can improve health outcomes. We learned how to fortify HVAC systems to filter dangerous particles and wrote about how to respond before vaccines were available. Years later, I’m still working on this. If we can improve indoor air, we can reduce the burden of respiratory illness and maybe even help with conditions worsened by pollutants.
But science evolves. Tools get better. We learn new things. What we thought was good—like cooking over indoor fires—turns out to be harmful. We once believed it was healthy. Later, science showed us the risks of smoke inhalation. That’s what science is: learning, adjusting, discovering.
Unfortunately, not everyone understands how science works. The internet amplifies both good information and misinformation. People cling to pseudoscience, not facts. But facts matter. Truth matters. And while scientists may argue among themselves, the process of questioning, testing, and correcting is how progress in science happens.
At the SAA, we try to support that process. We try to create a community where researchers, clinicians, patients, and families all work together. It’s not always easy. But it’s worth it.
And I’ll leave you with one last story. Over 15 years after my first daughter was diagnosed, she talked to her older sister and said, “I think you might have AS, too. But you need to see a doctor.” So the older daughter went, got evaluated, and the doctor—somewhat surprised—eventually confirmed it. So many of our members know these subtle signs that aren’t always captured in a clinical exam. That’s why support groups are so important. We need them just like we need family and friends, caretakers, clinicians, and researchers. Everyone in the community plays a role. Together, we help each other navigate, survive, and hopefully flourish.
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