Inside OCDCon: Why the IOCDF Global OCD Conference Changes Lives | Stephanie Cogen

What makes the International OCD Foundation's Global OCD Conference (OCDCon) so special?

In this episode of The OCD Confessional, we're joined by Stephanie Cogen, Program Director at the International OCD Foundation (IOCDF), for a behind-the-scenes look at the world's largest conference dedicated to obsessive-compulsive disorder and related conditions.

Stephanie shares how OCDCon brings together people with lived experience, family members, clinicians, researchers, and advocates from around the world to learn, connect, and realize they're not alone.

We also discuss:

•  What first-time attendees can expect 
•  Why the conference is valuable for both individuals and mental health professionals 
•  Exciting new research on pediatric OCD
•  How the IOCDF shapes the future of OCD treatment and education 
•  Why OCDCon 2027 in New York City is an event you won't want to miss 

Whether you've attended before or have always wondered what it's like, this episode offers an inside look at one of the most meaningful gatherings in the OCD community.

Learn more about the International OCD Foundation and future conferences at iocdf.org.

Transcript

SPEAKER_00 0:00

Oh my gosh, we are so excited. Live again from the IOCDF conference in Seattle. And we are joined by the program director of the International OCD Foundation, Stephanie Cogan. Thank you so much for being here.

SPEAKER_02 0:11

Thanks for having me. I'm excited.

SPEAKER_00 0:13

Do you have any confessions? Maybe we should start with that. I don't think you have lived experience with OCD Foundation. I do not have lived experience. Do you have any confessions of you know the anxiety that popped up as you were getting ready for this conference? I know that you've helped kind of oversee this massive conference here. Anything that popped up for you?

SPEAKER_02 0:27

Well, I'm anxious right now. This is my first time doing a podcast or anything like this. So I'm sitting with those feelings and I am I'm gonna get through it and we are gonna get through it together. You guys are making me feel very comfortable.

SPEAKER_00 0:36

That comfort is making you stronger.

SPEAKER_02 0:38

Exactly, exactly, yes.

SPEAKER_00 0:41

I'm Alicia. And I'm Liam. We both have OCD, and instead of spiraling alone, we decided to turn our symptoms into a podcast. You're welcome.

SPEAKER_03 0:50

Here we overshare real stories, laugh through the anxiety, and talk to actual experts who can explain why your brain keeps asking, What if I accidentally marry my cousin?

SPEAKER_00 1:00

Whether your thing is hand washing, mental rituals, or just silently panicking during normal conversations, congrats. You have found your people.

SPEAKER_03 1:08

This is a safe place, unless you're an interest of thought. In which case, get in line, buddy. We're booked.

SPEAKER_00 1:14

So grab a weighted blanket, cancel your plans for the fifth time, and let's dive in. This is the OCD Confessional.

SPEAKER_03 1:22

And yes, we did check this recording four times before uploading it.

SPEAKER_00 1:29

So it's Alicia's and my first time here at the conference. Um and Alicia is only like a year and a half or so into knowing she has OCD, and now she's here at the conference.

SPEAKER_03 1:40

I I am, and it's a it's a it's an exposure in and of itself. It's a it's a um yeah, it is. It is an exposure within itself, but we won't go down that road.

SPEAKER_00 1:50

Tell me about this conference. You've now been here for you said how many, 13 years?

SPEAKER_02 1:54

Over 13 years. 13 years. Yeah.

SPEAKER_00 1:56

So what should people know about what is this global conference? Mm-hmm.

SPEAKER_02 2:01

So the annual OCD conference, it's it's just such a unique experience. And I don't know if you folks have been to other professional conferences or just other conferences in general. Have you? But yeah, other than Leah's, I've been to some of the things.

SPEAKER_03 2:12

That's why you thought that we could just show up and not have anything in our group.

SPEAKER_00 2:16

That was the ADHD setting in.

SPEAKER_03 2:19

Okay. Is that for me? Sorry.

SPEAKER_00 2:20

Some people call that weaponized incompetent. That's that's me. I know that's her own anything.

SPEAKER_02 2:27

No, but what's so unique about this is even if you have been to other spaces, it's nothing like what we have going on here because we bring together the entire OCD community. So there's people with OCD and related disorders, there's friends, family supporters, um, and I should mention people with OCD of all ages, from you know, down to like three or four years old up to 100 plus. We have programming for everybody. And then we also bring our clinical folks in, our mental health therapists, our psychiatrists, our prescribers. The best in the best, yes. In addition to our researchers and then students and trainees of all various disciplines who are interested in working with or treating or uh researching OCD. So we bring all those people together, and that's so unique. There's I can't think of another conference that does it like we do. And you can really feel it in the atmosphere. It's just such a sense of community, and it's very electric and very motivating, very hopeful, and very welcoming and inclusive here. And that's I just love that about what we do, and it's just so reflective, I think, of who we are as an organization, even beyond this conference. It's kind of a little microcosm here. We we want to serve everybody, we want to bring everybody together, and this is you know kind of the big time of year where you can really visibly see that. It's a really great, kind of visible, you know, demonstration of what our mission is and how we seek to be as an organization.

SPEAKER_00 3:42

Yeah, I can confirm that that just in the few hours we've been here, so many people have come through and they're willing to share their stories. They seem so energized by what's happening here. For someone with OCD, why should they come to the conference? I feel like for a professional, someone who is giving the care, it makes sense to come and learn, you know, other interventions, what other people have learned. But for someone with OCD, what do they get out of this?

SPEAKER_02 4:05

Yeah, they get a lot out of it. And you know, you mentioned you're newer in your journey, and we have folks of all stages of their journey. Some people may have been diagnosed last week and you know, luckily enough, happened to find us and come here, and then some folks have may have been a more of a lifelong journey, maybe they've been coming for several years or living with OCD and managing it for several years. But obviously, there's the the key takeaways of you can learn some new strategies, some new ways of being in your treatment, you can get motivated. If you haven't started your treatment journey, you can get some really good insights about where to go and you know things to look for and things you should search out in your treatment journey. But even beyond that, I think for some people this may be the first time they ever meet another person with OCD. And it's just such this amazing sensation of oh my gosh, I'm not alone in this. Because OCD can be so isolating, right? It makes you, you know, it you're we're all trapped inside our heads and no one else knows what I'm going through. And then you come to a place like this and you see thousands of other people who know what it's like and know what you're going through.

SPEAKER_03 4:59

It really is special. I would say my first experience I was getting in my head and I started to question everything, and I was like, wait, everyone is. We're all in the same boat here. Exactly. Supportive and friendly, it's really been an incredible experience. If someone is wanting to come but they can't get on a flight, they don't want to face their fears. I almost didn't come because and I actually had a follower uh message me and say, I really want to be there, but I just can't. I can't do it. You know, it was too hard. Can they stream it online?

SPEAKER_02 5:28

They absolutely can. And we, you know, every year we started this a few years ago in 2024. That was the first year we did a virtual component, and this year we have, I think, five or five to eight things at any given time that folks can access. Some are hybrid, where there's gonna be folks here in Seattle sitting in the room, in addition to folks being online. And then we actually have a handful of virtual only sessions. So they're 100% live stream, they're a hundred no one in this room will be there will be no audience in person. It's all gonna be online. And that includes support groups, which is new this year. So we're really trying to create that space and that sense of community online as well as in person. And folks can do that honestly, up until even Sunday afternoon, they can still register. And even if they're not able to attend things live, they can watch them on demand after for 90 days. So that's very cool.

SPEAKER_00 6:13

Yeah, Alicia texted me, said I'm getting on my flight. It's tough for Alicia to get on flights. I've seen a full meltdown actually in South America one time with that. And I texted you. It's been nice knowing you.

SPEAKER_03 6:27

He thought it was being really funny with that one. It was actually pretty funny. What's actually funny is that he would have been here with no decor. I had it all on the plane. Oh no.

SPEAKER_00 6:37

If you had perished in a I don't think I would have been here at all. I would have been flying off to Spence and Parker and Smith and taking care of them. So what are you most excited about? I know you can't have favorites, you're the program director here, but what are you really excited to learn or learn more about at this conference?

SPEAKER_02 6:57

Mm-hmm. Every year we always change things up a little bit, but one of the constants for me that is always my I know it's hard, and the way you say with putting this conference together, I never want to pick a favorite because I feel like the whole thing is my baby. But I love the youth programming. I love seeing the little kids running around and just being themselves and making new friends and learning new things and just being so brave in so many ways. That is always the piece that I think will make me weep openly and you know just really touches the heart. Um Frankly, I am incredibly excited for your keynote, sir. So I cannot wait for tomorrow. No pressure, no pressure at all. It's very good. Yes. And then I always love, you know, we have a whole research track where folks are giving you the updates on the latest and greatest, you know, sometimes even things that haven't been published yet. So it's like we're getting a little sneak preview of some of the coolest new insights. So I always love, you know, I love all of it. As I say, it's all it's all my child, it's all my baby, and there's some things that I get extra excited for.

SPEAKER_03 7:50

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SPEAKER_00 9:33

And you have a little bit of a specialty with pediatric OCD. You've really dove into that space. What are the newest things with that? You know, we've um we've uh talked with kids who have pandas, right? So they had strep and the next day they woke up with OCD. And then we have kids that have taken that more standard thing where it pops up for them someday with contamination OCD or some other theme, and then it takes its course. What is the newest kind of thing with childhood OCD? And are we, do you think, doing a better job at this point identifying and treating?

SPEAKER_02 10:06

Well, we actually, the IOCDF is about to publish a pediatric white paper. So some of you may have seen last year we had a general, so to speak, white paper that covered um, you know, the lifespan with a main focus on adults. So we're about to do kind of a partner release. Um stay tuned, watch the space, and maybe about a month or so that focuses specifically on pediatrics. And unfortunately, it tells us it, you know, what we like to think of it as giving us a baseline. So now that we know what the data is saying about how big the treatment gap is for pediatrics, now we have a place to go. Now we have a story to tell, now we have a narrative to spin to try to get more people on board and try to reduce that gap. Um, but anyway, so that's coming out soon, and then we are gonna use that to springboard so many, you know, advocacy activities to try to spread awareness and help reduce stigma. But a few things that have come up through that paper is some of the special stuff that in you know that you think about with kids that you don't necessarily think about with adults is the role of schools, for example. So, you know, at the IOCDF we have a great program called Anxiety in the Classroom that is all online, it's all free access, and it has just so many incredible tools, resources, and immediately applicable learnings for folks who work in schools. So we're doing a lot to kind of get on the ground and get that out into the schools and work with school professionals. Yeah. So it's it's a really great and robust program, and I think some of the stuff that came out of the white paper really underscores the need for it. Um, you know, to try to get to that earlier detection. So once we have the earlier detection and diagnosis, earlier connection to treatment, and we can, you know, start getting rid of those statistics that we hear so often about the huge time that folks have to lose to their OCD between their first onset of symptoms and when they can finally start finding some freedom and relief.

SPEAKER_00 11:44

It was like 30 years each for me.

SPEAKER_02 11:47

And imagine if you had a teacher or a pediatrician or just someone early on in your life who recognized it because they knew, because they finally were taught and finally knew what OCD actually is instead of just the stereotypes and the stigma that they are fed through the media and things like that. Yeah, it's just yeah, yeah.

SPEAKER_00 12:05

How bad is the picture? I know that you're gonna have a white paper, you don't necessarily want to give everything away. Yeah, give us a little teaser on how bad that situation is with kids. I mean, my understanding is it probably should be better than when Alicia and I were growing up. We've probably come aways, but it sounds like there is a lot of work to do. So give us a sense of that.

SPEAKER_02 12:25

Yeah, so um for folks who read maybe have read our original white paper, you know that it was about 97, 98% of folks were not getting the evidence-based care. So it is slightly better for kids. It's about 95% are not getting evidence-based care. So we still have a long way to go. And it is, you know, again, marginally better for than it is for the adults, which, you know, it's I guess a little, it's a little hopeful in some ways, but we have a very long way to go. And so, you know, we're gonna be hitting the ground really hard with getting the awareness out about this and you know, actionable strategies of what no matter who you are, how you can help and how you can start with this early intervention and getting the word out in your own community, starting small, talking to school districts, talking to your family's pediatrician. Like that makes such an impact. And it was huge.

SPEAKER_03 13:13

Yeah, I personally wrote a letter to the school and the principal explaining what it was. And they all had a meeting and sat down with my son, and I didn't know that. Oh, it changed everything. This was for ADHD. But I said, here's what it is. They didn't know, and they were punishing him. They were punishing him. I was like, he was getting in trouble. I said, but here's and they changed their approach, they changed how they they spoke to him, everything changed. And it was just about me, yeah, you know, telling these teachers. I would say take the gest out of that.

SPEAKER_01 13:43

There's no jest in that. That's wonderful.

SPEAKER_03 13:45

Yeah, yeah. Well, so anyway, it's much needed. Yeah, that's great.

SPEAKER_00 13:50

Are there um certain interventions for this issue that you are recommending? In addition to, you know, one person doing their part and calling up the school committee, are there other things we should be doing? Other in the healthcare space, for instance, doing better training, the therapists, or what are some of the other recommendations you would make on that?

SPEAKER_02 14:11

Absolutely. And so that and that's the other piece. And it's such a thing where we want to balance the message, where we we don't want to blame and shame people for not knowing what they don't know. And we want to teach them what they don't know. So it's all about having, you know, finessing it in such a way that folks realize, oh, okay, I actually don't know that. Let me learn, let me get ready. So, yes, there are absolutely going to be strategies for health systems and for training directors and for graduate programs as well. Because I know, you know, as you've heard and I know you may have seen and just experienced in your lives, we a lot of graduate mental health professionals don't really get specialized training in OCD. Maybe an hour, maybe if they're lucky enough to have an internship or work at a place that has one of our esteemed, you know, scientific and clinical advisory board members on the faculty, then they're luckier than most because the majority of folks coming, you know, I'm a social worker by training, and I didn't really get any education about OCD in my graduate education. So learn it all through working here.

SPEAKER_03 15:02

I was just gonna say, you probably learned it all from here.

SPEAKER_00 15:04

Yes, exactly. We need to be doing much more on that. Someone's listening, this is the first time that they've heard of IOCDF or the conference. What would you want them to know about the mission? Where should they go to learn more?

SPEAKER_02 15:17

I would want them to know that, you know, our mission, it's it's short and it's sweet. It's that we want to build a world when anybody affected where nobody affected by OCD suffers alone, and we want to provide help, healing, and hope to all. So I would want folks to know that. I would want folks to know that there is hope and that there is a place for them, and that there's this incredible community just waiting to wrap their arms around them and include them, including at this conference. And it only happens once a year, but um, we have so many other touch points and ways to get involved, both with us as you know headquarters as national, but with the local affiliates. We have them all over the country and you know over 30 states. We also have global partners all over the world. I know you guys have quite a reach, but just I would just encourage you, if you're ready, whenever you are ready, we will be here for you. So reach out, and whether that's just following on social media, making a comment. We have a great online community called Health Unlocked that's like a peer-to-peer messaging board. Maybe post a message on there, you know. So if you're not ready to come and join us in person, totally fine. We have whatever you might want at whatever level you're ready for, even just reading an article, reading a blog post, teaching yourself something new. That that all counts. It all is just a great step forward in building this world we all want to build where nobody affected by OCD suffers alone.

SPEAKER_00 16:25

I love that. And the IOCDF for me was huge when I first was diagnosed and needed to figure out what is this thing. I didn't know anything about it. I had a total misconception, as many people do, of what it is. And the IOCDF, the resources online, the ability to connect with a therapist who specializes in that and be able to trust that okay, there's an organization here that knows what this is, knows how to help me. That was huge. So shout out to the IOCDF for that and everything you've done since then. Help. Um next year is New York. Yes. Tell us a little bit about that.

SPEAKER_02 16:57

Yes, please come. We're gonna be in New York. So we like to um bop the conference all around the country to make it a little bit easier to get to for folks. So we're on the West Coast this year, so we're gonna go back to the East Coast next year. We'll be in New York City over the summer. I would encourage everybody to come. It's just there's nothing like this conference, and as we have mentioned, if you're not ready to join us in person, we will have the virtual component again. Um and then if you're interested in potentially speaking, we always do a proposal system. You don't have to have a million degrees or have been in the field for 20 years to propose. We take everyone as a speaker here, as you may have seen on the schedule. We have kids as speakers, we have, you know. Exactly, yes, yes. And we want to encourage you to do that. And then if you don't want to speak, we have tons of volunteer opportunities, we offer scholarships, so there's just so many ways to engage with the conference. And yes, next year, New York City. It's gonna be great.

SPEAKER_03 17:47

Yeah. We'll see you there.

SPEAKER_00 17:49

I might set up like a confessional booth. This is Alicia's idea to create a little booth, people walk in and confess. One last question how loudly tomorrow are people gonna boo me after I give my speech.

SPEAKER_03 18:00

Well, I'm not making it there, so I think Liam thinks people are gonna boo him.

SPEAKER_00 18:07

But I think I if they have tomatoes, they'll throw them.

SPEAKER_02 18:10

I'm gonna I'm gonna choose a path and I'm gonna say maybe, maybe they will. We have no way of knowing. Um, but far more likely, I would say I have a feeling you are going to get a standing ovation.

SPEAKER_00 18:20

Oh man, if I can stand ov that I might actually cry if I get a standing ovation. For Leah, I'll come because my wife is gonna give the speech with me. I would cry for her because she's nervous.

SPEAKER_03 18:30

Yeah, that would be amazing.

SPEAKER_00 18:32

Well, thank you so much, Steph, for everything you've done and for inviting us in here to this booth. This is so fun. Such a cool experience.

SPEAKER_02 18:39

This is great. Yeah, thanks again. You killed it. Yeah, thank you for letting me sit with my fears and face them with you.

SPEAKER_00 18:48

Thanks for listening to another episode of the OCD Confessional. Be sure to follow the show so you get new episodes. You can subscribe to us on YouTube or find us on Instagram and TikTok at the OCD Confessional.