[00:00:00] Kathy: Hey, welcome to the lichen sclerosus podcast brought to you by the lichen sclerosus support network, where we bring you the information so you don't have to go searching. My name is Kathy and I am the executive. Executive director and co founder of LSSN and today I'm so excited because I want to introduce to you one of our amazing volunteers and a workshop that we are so excited to bring you and tell you all about it.

[00:00:33] So without further ado. I'm going to introduce you to Sienna. Welcome, Sienna.

[00:00:53] Sienna: Hey, so nice to be here with you.

[00:00:57] Kathy: Thank you. Thank you. Well, thank you so much for volunteering. Without our volunteers and our donors, we would not have an organization and be able to do the things that we do. So, I want to introduce, um, Sienna. Your position, so you are chief fundraising officer, um, and your role is to help us to create, um, these opportunities where we're able to bring information, education, and support to our community, um, at the same time to raise donations so that we can do more of it, right?

[00:01:33] Yes. So, um, when you started your position, it was, um, Late last year and we were brainstorming and you had an idea for a workshop. So first off, tell us a little bit about yourself, your journey, and what made you Uh, think about this workshop.

[00:01:59] Sienna: right now, I'm currently a first year student in college at the University of Washington.

[00:02:06] And transitioning to college was definitely hard with everything going around. But, it's, Struggling with LS at the same time was definitely a whole new experience, having been recently diagnosed in last summer. So it's still a pretty new experience to me. I found myself when I went to college looking for kind of a space in a community to discuss uh, LS with other people.

[00:02:30] And when I went searching, my first search was to go online and I came across a bunch of platforms, but they all seemed really geared towards older aged people and whatnot. So I really struggled to find like my own voice and then also people with more relevant experiences towards what I'm going through.

[00:02:50] And being in college and all that and new. Sexual experiences, kind of where everyone's figuring everything out and we're dating culture and all that is definitely really rampant and clear. I really struggled and I wanted to find my space and my community and I came across The lichen sclerosus support network where I met you Kathy and when we really got to talking and kind of thinking of my own experience and what exactly I thought would be really great to add to the wonderful community you've already created.

[00:03:25] Thinking about a space for young people was really something that just immediately popped in my mind when talking with you about it

[00:03:33] Kathy: I love that because that was one of the things that we had heard too from other young people in our community was that they felt like the, you know, when they came to the virtual meetups, there were a lot of older people.

[00:03:50] And so it was, You know, their voice wasn't really reflected. There's, you know, their scenario, what they were going through, wasn't really reflected, even though we were there and we supported them, they still, they, they didn't hear that, um, as much. And so they didn't really come back, which is a shame. Um, and so we really did want to create something that allowed them the space to be with their peers.

[00:04:18] And also to give them support in where they are right now in the stage of life that they are right now. So tell us about your idea and we can talk about, you know, what the evolution of that was and what we're so excited to, um, to launch.

[00:04:37] Sienna: , so our idea kind of started off of thinking just what Reflects young people like what's gonna attract them like and from my own perspective being only 18 and a freshman in college I felt like I had a really good point of view of that and just thinking what really matters to me when I think of ls And what I'm going through and kind of how that impacts my life.

[00:05:04] And I feel that dating with Ellis was super scary, but, and so I know part of our workshop definitely does revolve around the dating aspect. And, but before you get into dating, all that, you really have to accept yourself and you have to feel confident in yourself. So that was the first like foundation step.

[00:05:24] We really wanted to make, build our relationship. Because you can't have good thriving relationships if you don't have that healthy relationship with yourself first. So, and building that healthy relationship with L. S. can definitely be a struggle. Kind of, it's a new thing as you get older. Somebody who's recently diagnosed.

[00:05:43] Just so many things racing through your mind, figuring out what is this, how is this going to impact my life and finding other people who have gone through the same thing and knowing what you're going through felt so valuable to me and is something I wish I really had. When it all kind of first happened, so we knew we really were wanting to build a community where people could learn about L.

[00:06:07] S. and become more confident in themselves, but then also kind of get those questions they want answered of how is dating with L. S. and all that kind of stuff. So we've kind of built it up from there.

[00:06:18] Kathy: Yeah. And it was, um, really hearing, uh, your framework. So you kind of came in and you're like, these are the things that I want to talk about.

[00:06:28] These are the things that we want to know. And it was really powerful because we had just had, um, our Holistic Healing Summit, uh, 2024 Holistic Healing Summit. And it really was geared around, intimacy, relationships, that love of self. And so hearing you, I was like, why don't we do this workshop? And we use the information that the experts have already given us from our past holistic healing summits.

[00:07:02] And, you know, frame it in a way where we can pass that knowledge on, um, in a way that is. welcoming, that creates connections, that really does. help people, um, really like grasp it in a scenario where they're going to internalize it, but also make connections with other people that they can have, um, those connections going on even after the workshop.

[00:07:33] And so what we decided was to take the replays and we created, you know, new We stitched some things together, decided what practices we wanted to, um, to put together and created this workshop. It's a five, uh, session workshop. So we're going to meet on Mondays from 7 to 9 p. m. Eastern Standard Time and for two hours from 7 to 9 and each workshop that we meet is going to have a different um, It's going to have a different focus.

[00:08:15] So the first week we're going to be talking about talking about LS, right, in either platonic or in, in intimate conversations. How do we talk to other people about lichen sclerosis? How do we, um, you know, tell them about it? How do we tell them about our journey, where we are, so that they understand and They're along with the journey for us and to be there with us.

[00:08:46] Right. Um, and then the second week is, uh, is gonna be on emotional intimacy and redefining sexual intimacy. What does that look like for you in your relationship or future relationship in a way that you are able to guide that relationship, um, and really. Not feel like you know, you can't do something. So then you're you're not good enough or you can't Tell people what it is that you like and what you want and what you can and cannot do in this moment What does that look like and then you know taking sex out of just penetration.

[00:09:30] There's such a broader Definition of sex That, you know, a lot of us kind of get stuck in, it's not penetration, it's not sex, and that's not true. So talking about that, and then our third meeting is going to be around, Everyone deserves pleasure, and pleasure doesn't mean just sex. There's pleasure. You can find pleasure in so many other things.

[00:09:54] Um, and so working on that self love, working on what does that look like for you, working on, um, again, making those connections. And then the fourth week we're going to be talking about finding your pleasure. Um, outside of just, you know, outside of sex, but finding ways that you can, um, increase your pleasure, increase all of the, um, you know, the allowing yourself to find pleasure in other things.

[00:10:24] Because when we have a positive mindset, when we are thinking, when we're forward thinking, and we're looking into the future, That's good for our health, right? Not just our mental health, but it does translate to our physical health as well. And then the fifth week, we're going to have a special guest, uh, a certified, uh, sex therapist is going to be coming in and answering questions.

[00:10:51] He's going to be giving us a deeper insight into all of the things that we had met. We had, uh, done in the four weeks prior. Um, and so we're super excited about. All of that learning and um, Sienna, talk to us about the format. What is this gonna, how are we meeting? What is this gonna look like during these sessions?

[00:11:16] Sienna: Yeah, so during these sessions we're gonna be meeting about every other week except on the very last week. Those weeks are gonna be back to back and we're gonna meet for about two hours each session and we're gonna have a bunch of spaces where we can all talk together as a group and then you can also have kind of those smaller group conversations in breakout rooms and we're gonna have we're have broken down these videos so it's going to be certain parts all linked together and then we're going to give you all the space and time to do sometimes the exercises, some worksheets we've had.

[00:11:54] presented and prepared for you guys. So it's going to vary week by week, but pretty much the format's going to be about two hours and we're going to have a bunch of different elements where you guys are going to be able to be able to think on your own, kind of have that space and just sit back and listen and kind of absorb all that.

[00:12:12] And then you're going to be able to share your thoughts and listen to others.

[00:12:15] Kathy: Yeah, we really wanted to focus on connections first and then also getting, uh, letting you absorb that information because if we just word vomit and spit it out on you, it's like, you know, you absorb some of it, but it's mostly going to bounce off.

[00:12:33] So being able to take the time to give you the information and then allow you to practice it in more intimate groups, these breakout rooms. Um, is really going to help you to internalize that. And then the hope is that as you, you know, use these breakout rooms you get, you know, more connected with your other group members.

[00:12:59] The other exciting part is you're not just going to be connected during these two hours. We're also going to have an off social media platform Um, private group where you'll be able to connect with each other whenever you want 24 7 for three months, you're going to have access to these, this private group where inside of that group, you're going to have access to education about lichen sclerosis itself, how to treat, what is, um, you know, clothing look like, exercise look like, what can you do, what are some remedies for you, as far as like treatments and abjuncts, moisturizers, all of the LS specific questions.

[00:13:45] You're going to have that database. of blogs and videos that you can go through at your own pace. Um, as well as you'll have props for the upcoming, um, session, you'll have the replay. So you, if you missed the session, or you wanted to go back and, um, look at something that was said or looking at one of the videos.

[00:14:09] You'll be able to go back and look at that replay.

[00:14:12]

[00:14:13] Kathy: when we did a breakdown of all of the features available in this workshop, forthe whole three months.

[00:14:20] you would end up paying over a thousand dollars for a seat in, in this workshop. But we were like, you know, These are younger folks, so this is open to anyone 18 to 30. Um, and you know, we know you guys are in college. You're starting your life with, you know, new jobs, just being out there in your own.

[00:14:46] And it's really important to us that you get this information, get this space, have these connections. And so we were like, we have to make this cost effective. So. Sienna, talk to us about pricing.

[00:15:02] Sienna: So the pricing for this, we're going to be having an early bird special, which is going to be between February 3rd and the 10th. So it's going to be 59. 99 with no journal and then 74. 99 with a journal and then after the early bird it's going to be 99. 99 without the journal and 124. 99 with the journal and that journal is an option in case you are wanting to purchase it and we feel that as Kathy's showing right there we feel it would be really valuable to have during this session so you can have a space where you have all your notes or maybe those activities you will have done throughout the session and whatnot and you can take a And can you always have that to look back and reflect on?

[00:15:49] Kathy: Absolutely. And like I said, we're going to be doing prompts and things. So you have um, a journal where you know this is your, um, your journal to come and just, you know, while you're going on during the week, maybe you'll have, um, you know, a thought and you want to share with the group. When at our next meeting you have a dedicated space where you'll have all of those thoughts and like Sienna said you'll be able to go back and reflect and um, you know, it really does give you a space that just house all of those those thoughts and tips and things that you're going to be learning about.

[00:16:28] So we're super excited to launch that starting on February 3rd. If you are not on our email list, you can jump on to our email list so you get notified and be one of the first ones to join. There is limited space. And so you can do that at lssupportnetwork. org slash subscribe. We're going to have all of the details in the show notes of this video or if you're listening on the podcast in the podcast notes.

[00:17:01] So one of the things that I'm super excited about, Sienna, is that you and I, we're going to be hosting And we are going to be hosting the four weeks that we are going to be meeting where we're going to be showing the replays and really guiding people through the practices and letting them do their own exploration.

[00:17:22] You know, this is, this is, um, you know, a workshop where you're going to want to show up live, you're going to want to be open, you're going to want to do the work in order for you to see that transformation. We want you to. Be, have those connections so that as you go forward, you don't, you don't, you're not alone, right?

[00:17:42] You, you really have that group of people who get it, you know? It's so, sometimes it's really hard to talk to our peers about what's going on, um, because we feel like, oh, their experience is different. So I'm going to just internalize and I'm not going to say anything. And really this is why we created this workshop so that you have that opportunity to really be in connection with someone who, who gets it.

[00:18:13] What are you most looking forward to, uh, Sienna?

[00:18:17] Sienna: Yeah. So to build off what you said, I really believe that our workshop is going to be whatever you choose to make it. So as long as you put that effort in, it's definitely going to be beneficial for you. And I feel like I'm most excited to have built a space where people feel comfortable and happy to share.

[00:18:35] That's the thing I'm really most looking forward to. I'm looking forward to having that vulnerable space where people can finally feel like they're getting their questions answered. And they feel like they are surrounded with a community of people who are there to support them. I'm really excited that people are going to be able to potentially build these lifelong connections.

[00:18:50] And I think that's the thing I'm most looking forward to.

[00:18:53] Kathy: I agree. So this is 100 percent virtual. You can join us from anywhere in the world. I know the time frame is a little late for our UK and Australia folks. Um, but the hope is that once we get this first iteration of the workshop done, that we'll be able to add other times where we'll be able to, to make it more accessible for our friends on the other side of the planet.

[00:19:20] So super excited. Get on our, on our email list. Get, um, be the one of the first ones to join. 59 99 or 74 99. For, uh, our early bird, which is going to start February 3rd through February 10th. I believe it is. Um, and get your, hold your spot because I have a very strong feeling these are going to go really quickly.

[00:19:47] So you do not want to, to wait on that. Any, any last words, Sienna? I

[00:19:57] Sienna: think the only thing I have to say is that I hope anybody who comes across this and finds this opportunity really just takes the chance to seize it because I feel like it's going to be a valuable opportunity and you do not want to miss it.

[00:20:12] It's going to be great.

[00:20:13] Kathy: Yeah, I don't know of any other opportunity specifically for young folks with lichen sclerosis like this. So I'm super excited to have this, uh, this out there for you guys. So check the show notes, get all the links there, and we will see you. Oh, we forgot to mention. The, the sessions start February 17th.

[00:20:38] So our first session will be February 17th and they will run till April 7th, um, and the community will be open, uh, through May. So super excited to have you guys. Super excited to meet everyone who's going to be a part of our workshop and for you guys to meet each other because I really want you to find your next best friend who really is going to be there with you on this LS journey.

[00:21:05] So I will see you guys next time and thank you so much for listening and watching us today. Bye!