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
Alexis Roderick Joel
Good morning. Never in a million years would I expect to be opening a lab at Cold Spring Harbor. I grew up in Northport and then Centerport. My husband is from Hicksville in Oyster Bay and we met in Huntington. So geographically, I understand the locality aspect, but I can tell you that I am probably the least qualified individual for this role. I believe I may not have passed my biology regions, just unfortunately, I am qualified for reasons in which I wish I was not. I have endometriosis. My tissue will be part of the 30,000 specimens. Thank you.
Cold Spring Harbor Lab is such a source of pride. You do know they discovered DNA here. I know that that is not the full course of events, but to us long islanders it is and we're sticking with it with. I do want to speak about my qualifications in respect to my endometriosis story. I had years of debilitating pain. I had A-P-C-O-S diagnosis and many of us too surgery to remove fibroids constant UTI symptoms, many specialists appointments based on the pain and suffering on different organs. I saw GYNs, gastroenterologists, endocrinologists, radiologists, rheumatologists, urologists, more CAT scans and MRIs than I can count. The pain was cyclical and it escalated. I was begging doctors to help me. Once I received a diagnosis, I had ablation surgery. It was followed by internal bleeding. I was admitted back to the hospital and I never recovered. I had scar tissue inside my body and I had intense pain that was constant and debilitating.
I have two young girls and we were traveling around the world. I did not have the time or ability to care for myself. And the one thing that health or lack thereof does is put your life in perspective. I had to stop everything and start looking for answers. During this time, I was still being dismissed by doctor, after doctor, some specialists and some GYNs. My pain was due to the disease still in my abdomen. By luck of Google and some research I found Dr. Tamer kin. He had already operated on comedian Amy Schumer. We had friends in common. So I spoke to Amy and she told me he will change my life. She was correct, but he changed it in more ways than I could have anticipated. Here I am opening a research center for endometrial and I egg hold Spring Harbor. And in case you don't know, my husband has a park right here in the village.
So now when we're on the boat, I can say that's my building. By the time I finished my surgery for the second time, I had 27 specimens removed. Hopefully you will be using them here. And a uterine fibroid that required my uterus to be cut open, stitched back in order to remove it. And I had my ovaries suspended by string coming out of my stomach. And if you've never done this, which hopefully none of you have, if they have to do that, you were unable to move for 24 hours. Thank God for the staff at Lennox Hill and my cousin Katie, who moved her chemo appointment come get for me and all the drugs that they could knock me out with, my husband was working at the time. So I'm lucky that I have a large support group, but many don't. And the difference today is that that story is in the past.
Our stories all sound the same. While we can't change that, many of us have this diagnosis, we can change the time and trajectory of these stories. We will no longer sound the same. Dr. Kin had the forethought to collect these samples before anyone knew when and how they were going to be used. Due to his brilliant mind and empathetic heart, he kept doing what he did. Developing new ways to help women find ways to eradicate the disease and the eventual formation of the Endometriosis Foundation of America. So many women show up for him because he showed up for us when no one would. We now have the single largest collection of specimens to begin research here into this space. As Dr. Beam described it, we used to be building the airplane as it was taking off. We have built the airplane through the things like breast cancer research. We now have the fuel to travel at lightning. That would not be possible without the marrying of Cold Spring Harbor. The powerhouse for genomics and Dr. Kin's tireless work, persistent, oh this is old. I'm sorry.
Persistent, often invisible burden of endometriosis and the transformative potential of genomic scientists. This is all beginning to change. Starting today, our past can fuel our future. Our pain can be the building blocks in which this center is built. Every person here has felt this pain, men, women, children or lack thereof, that having that choice for many women, the pain stretches far and wide. Its wrath, knows no limits. What begins as a painful period for many young women goes on to wreak havoc in their lives and organs robbing many women of opportunity, joy, and choice over their bodies. We take for granted those choices, especially at a young age. The need for this research will be crucial in helping these young women understand their genetic predisposition. They will know why their bodies function a certain way and what to expect. Many of us fought for this change.
Our doctors, the scientists, supporters, and the formation of the endometriosis foundation. Everyone here knows the numbers. 10% of women of reproductive age, more so if they are predisposed. Yet for too long it has remained underdiagnosed, misunderstood, and underfunded. Its symptoms are most crucially. Its biological roots are not fully understood. Our pain is no longer in vain. The next generation will benefit from our heartache and overwhelming darkness. This is the beginning. Our voices are heard, our champions are all empowered. And while there is so much work to be done, we can now know the future is bright. This is more than science. It's a pathway to an earlier diagnosis, targeted therapies and personalized care for millions who have waited too long for answers. I am so proud to be here and to be a part of this day. I thank you my husband. Thanks you women all over the world. Thank you. And my girls well thank you because they are probably going to have this, but they won't have to suffer. So thank you.
I don't want to fail. I really have to recognize one special, two special individuals, Dr. Amanda Chu, who has been helping me for the last seven years and has learned all my tricks and I trust her tremendously. I'm sorry. And Dr. Ion, who's been very supportive of me and we have written incredible articles on endometriosis and cancer at New England Journal of Medicine with her through these specimens. And they are historically with me. Thank you very much.
