PRESS CONFERENCE
Announcing the Seckin Endometriosis Research Center for
Women’s Health at Cold Spring Harbor Laboratory (CSHL)
Thursday, May 1, 2025 10:00am
Cold Spring Harbor Laboratory
Piraye Yurttas Beim, PHD
Hi everyone. I echo everything that's been said and we'll just say a few words from the perspective of the foundation. So I was really honored to take over the chairman role of the Endometriosis Foundation of America recently. It's an incredible legacy. The founders, Padma Lakshmi, Dr. Kin, and it's an exciting time for the foundation. This is really, I think, the capstone event in the transition that the foundation's going through right now, which is that this was a disease that nobody had heard of that was very poorly characterized and was really defined by a clinical experience. Women were in pain, women were experiencing infertility and their physicians were trying to understand, but it was always very confusing because some women had a lot of pain, but clinically when they would go in surgically, they didn't find that many lesions. Some women had many lesions, lighter pain, some women had infertility, some women didn't.
And so physicians have really done their best during the clinical era of this disease. As genetic technologies, big data AI have progressed. We've seen a sea change in conditions like cancer, how we can detect it early, understand why it runs in. Some families understand how one breast cancer is distinct and unique from another breast cancer, and ultimately have not just better diagnostics and better information, but better treatments that truly cure these diseases. Sadly, most women's health conditions have fallen behind in this race forward technologically to really go from understanding disease based on the clinical experience of the patients and what the doctors are seeing, to really understanding on a molecular and cellular level what these diseases mean. We have to understand them on that molecular and cellular level to be able to move women's health conditions like endometriosis into the same era that we've been able to move conditions like cancer and what is so exciting and the moment when I knew that I really needed to step up.
I run a biotechnology company. I'm also a scientist. I've been to Cold Spring Harbor as a graduate student for the symposium and the incredible events that they host. So I've known about the legacy of Cold Spring Harbor. I, as part of the broader scientific community, have benefited from this legacy. And when Dr. Seskin told me that there was an opportunity to take the power of what the foundation has created, including this incredible biorepository of surgical specimens that have been collected and patients have given to research to try to help answer some of these questions together with a legacy of an institution like Cold Spring Harbor, which really is, I think unparalleled both in reputation and in the quality of the genomic and molecular science that's happening here. When there was an opportunity to bring those two together to create the first dedicated center for endometriosis research, I said, okay, we got to get this done.
This is historic. And the other thing is that I really felt strongly, we felt strongly it needed to be named after Dr. Kin. This is not something that, I mean, he was very humble about it and said, it doesn't have to have my name on it, but we said, no, it absolutely has to have Dr. Kin's name on it because if there's a single person on earth who has helped ensure that people really understand this disease and the impact it's having and who has paved the way for this incredible milestone for the scientific community, it's been Dr. Suskin. So I just want to take one more second and just thank Dr. Kin for his legacy and say congratulations.
I will say that like many people, I ended up here on this podium, both because I'm a scientist, but also because I was a patient of Dr. Kins and I had a very similar journey to someone who I'm about to introduce as well. So many of us who have endometriosis, me included, spent years of our lives thinking that we were just more sensitive to pain, that the level of pain we were living with was normal. For some reason, we were experiencing it in a harder way than other women. What we've learned over time is that we're not pain wimps, we're pain warriors, and a lot of women with endometriosis self-identify as endometriosis warriors for a reason. We've had to overcome years of medical gaslighting being made to feel like our pain was normal or should be dismissed, and that we should just carry on normal functioning when we had a level of pain that for many women is like transitional labor level of pain.
We've been medicated by having our hormones disruptive. We've been medicated by having to take painkillers and we never really had a cure for this disease. I met, I had the opportunity to meet Alexis Joel recently, and what I wanted to say to her before she comes and shares the words is this is a condition that is estimated to impact one in 10 women on earth. And yet we could name the people who have a platform, celebrities, people who are in the public sphere, really on our fingers and toes. How many people have come out said they have this disease, shared their journey and advocated. And so what I said to Alexis, and I want to say it again here and thank you for being here, is that we need more people to say, I'm in pain. It's not okay. Some days I can't function. We need people to feel brave to talk about it because until we have people who have name recognition and that people can relate to talking about this disease, it is going to be kind of relegated in the shadows and underfunded and under supported.
Less than 9% of all government funding in the US goes to women's health conditions, and a tiny fraction of that goes to endometriosis research. So when we say that we're going to launch a $20 million initiative, that's a huge deal for our field, but it really should be a lot more than that when we think about the billions of dollars of economic waste in women who are not flourishing because of a disease that could be diagnosed and treated if we just researched it, understood it, and brought it into the modern era. So I really want to thank Alexis. I know that there's many causes that you guys as a family could be supporting and you as an individual could be supporting. But the fact that you want to pay it forward to all the other women who are dealing with this disease and want to help raise awareness for our institute and our center and our foundation means a lot to us. So thank you. Alexis, do you want to come up and share? Thank you.
