Alexis Roderick Joel is passionately advocating for increased awareness and research funding for women’s health. She lives with endometriosis, a chronic condition affecting 10% of women worldwide. Recently, she was appointed Chair of Advocacy & Strategic Partnerships at the Endometriosis Foundation of America. She also serves as Co-Chair of The Joel Foundation, created by her husband, Billy Joel. The foundation supports the Seckin Endometriosis Research Center at Cold Spring Harbor Laboratory on Long Island, which is dedicated to pioneering research on endometriosis. On July 10, Alexis will host a private event in Sag Harbor to support the EndoFund.
You’ve spoken openly about your own experience with endometriosis. What motivated you to turn a personal health challenge into a public advocacy mission?
I never set out with a specific mission in mind. My journey began after I was finally diagnosed with endometriosis during a difficult surgery in Florida. More than a year of searching for the right physician eventually led me to Dr. Tamer Seckin in New York, who performed my second surgery. He was the first person who gave me confidence that I would finally have answers and a path forward.
What struck me most was how long it takes so many women to receive a diagnosis. Even within our healthcare system, the delays are extraordinary. Everyone in the endometriosis community understands what it feels like to live with pain, uncertainty, and the frustration of not being heard.
Like so many advocates, I simply wanted to help. I began volunteering and supporting outreach efforts within the endometriosis community, and over time I realized that I had both a platform and a voice. I feel fortunate to be able to use them to raise awareness, support others, and help ensure that more women are heard. Using that platform for good has become deeply meaningful to me.
As Chair of Advocacy & Strategic Partnerships for EndoFund, what are your top priorities for raising awareness and driving change in the coming years?
My top priorities center on addressing the gaps that continue to prevent people with endometriosis from receiving timely, effective care. Awareness remains critical, but awareness alone is not enough. We need a coordinated approach that includes education, access, and innovation.
That means expanding public awareness, improving physician training so healthcare providers can recognize and manage the disease earlier, and advocating for meaningful insurance coverage — particularly for specialized surgical care, which remains inaccessible for many patients.
At the same time, these efforts must go hand in hand with increased investment in research. We urgently need better diagnostics and new therapeutics so patients are not forced to wait years for answers or rely on limited treatment options. My hope is that by bringing together advocates, clinicians, researchers, policymakers, and industry partners, we can build a future where earlier diagnosis, effective treatments, and equitable access to care are the standard — not the exception.
Despite affecting roughly one in ten women worldwide, endometriosis remains widely misunderstood. Why do you think awareness has lagged behind, and what needs to happen to change that?
One of the biggest reasons awareness has lagged is the extraordinary delay in diagnosis. If it takes seven to ten years, on average, for someone to receive a diagnosis, you have to wonder how many people are living with the disease and remain undiagnosed. We can’t fully appreciate the scope of the problem when so many patients are never counted.
Another major factor is the lack of education and training within the medical community. Many physicians receive little instruction on recognizing and treating endometriosis, and there are too few surgeons with specialized expertise. Women’s health overall has historically been underfunded and under-researched, leaving millions of patients without the scientific advances they deserve.
There is also the stigma surrounding a disease that begins with menstruation. For generations, painful periods have been normalized or dismissed, and women have often been told that their symptoms are simply something they have to live with.
Changing that requires a comprehensive approach: increasing public awareness, improving physician education, expanding access to specialized care, and investing in research that will lead to better diagnostics and new therapeutics. Most importantly, we need to start listening to patients and treating endometriosis with the urgency and seriousness that a disease affecting one in ten women deserves.
You recently moderated a panel at the inaugural National Conference on Women’s Health hosted by the Department of Health & Human Services. What were some of the most important conversations or takeaways from that event?
One of the most valuable aspects of the conference was the opportunity to bring together experts from many different disciplines and perspectives to discuss women’s health in a more comprehensive way. I had the privilege of moderating a panel on the causes of infertility, where we explored the role that endometriosis and its many comorbidities play in reproductive health.
It was particularly important to discuss these conditions alongside fibroids and PMOS — formerly known as PCOS — because these disorders are interconnected and affect far more than fertility alone. One of the key takeaways was that endometriosis is a full-body inflammatory disease that should be understood and managed throughout a woman’s lifetime. It becomes part of how you function, and its impact extends well beyond the reproductive system.
Another important message was the need for women to become their own advocates. Understanding these diseases empowers patients to recognize symptoms, seek appropriate care, and ask the right questions. I was also struck by the insights shared by our reproductive endocrinology and infertility and obstetrics and gynecology, who highlighted how hormonal testing can provide valuable information and help identify underlying conditions — even for women who are not trying to become pregnant. That broader perspective on women’s health, rather than viewing these diseases in isolation, was one of the conference’s most meaningful themes.
As co-chair of The Joel Foundation, how do you balance its support for music education with its growing commitment to public and women’s health initiatives?
From the beginning, I was drawn to the importance of music therapy and the role the arts can play in health and healing. Through The Joel Foundation, we have long supported music-based therapeutic programs, and I was already familiar with the clinical benefits of music therapy.
When both my husband and I experienced health challenges — conditions that are often misdiagnosed or go undiagnosed for years — I felt compelled to use that experience to help others. That naturally expanded our interest in public and women’s health.
There is actually a great deal of crossover between the physicians and researchers I work with through the Foundation and the people I collaborate with in my advocacy work as a private citizen. Whether it’s neurologists studying Parkinson’s disease, specialists working with autism, or researchers connected through organizations like Cold Spring Harbor Laboratory, many of these worlds intersect, particularly around the science of music therapy.
At The Joel Foundation, we support programs and research, including initiatives focused on endometriosis and education surrounding women’s health. Separately, in my role as a private citizen, I am able to engage more directly in advocacy — both for music therapy and for endometriosis awareness. To me, these efforts are complementary. They all center on improving quality of life, expanding access to care, and helping people who too often go unseen or unheard.
The event in Sag Harbor is designed as both a benefit and an awareness-raising event. What do you hope guests leave thinking about after attending?
I hope people leave feeling inspired to help us change the narrative around endometriosis. We are making meaningful progress, but this work takes an army. No one person or organization can do it alone.
I want guests to see that everyone has the ability to make a difference and that lasting change happens when people come together around a common purpose. My hope is to leave a lasting impact by doing what I can, and I’m incredibly grateful to everyone who comes out to listen and support the cause.
Once people understand the statistics, the years-long delays in diagnosis, and the profound impact this disease has on women’s lives, they often feel compelled to help. Awareness itself is powerful, and I hope guests leave not only informed, but motivated to be part of the change.
