Advocacy in Action: Hallie’s Story of Growth with Tourette Syndrome

In this episode, I sit down with Hallie Hoffman—a longtime NJCTS volunteer, youth advocate, and all-around powerhouse—to dive into her personal journey with Tourette Syndrome. Hallie shares her early experiences with tics, her decision to seek a diagnosis at 13, and how that moment catapulted her into advocacy and leadership. With honesty and warmth, she reflects on how self-awareness, support systems, and community resources shaped her path to resilience and self-acceptance.

We touch on everything from Hallie’s dietary discoveries to her thoughts on co-occurring conditions, mindfulness, and accommodations. Plus, she offers valuable insights for anyone navigating life with TS—whether you’re newly diagnosed, a parent, or an adult figuring it out as you go. Hallie's story is a testament to the power of owning your narrative and finding strength in community.

Episode Highlights:

[0:00] Help NJTS advocate for funding in New Jersey! 

[1:47] Kicking off with Hallie's TS journey and how early signs led to a self-initiated diagnosis.

[5:33] Why getting that label was empowering—and how it sparked Hallie’s drive to become a youth advocate.

[10:33] Finding belonging and mentorship through NJCTS and the Tim Howard Leadership Academy.

[14:07] Life now: how Hallie’s tics have evolved and why disclosure is a personal choice.

[17:47] Hallie’s creative coping strategies—from mindfulness to making tics less disruptive.

[22:30] Navigating co-occurring OCD and anxiety, and how awareness has helped her cope.

[24:07] The impact of diet: what helped Hallie and why everyone’s experience with food is unique.

[28:03] Reframing diagnosis: from stigma to tool for empowerment and accessing resources.

[31:32] Why resources like NJCTS’s provider list are game-changers for the TS community.

[36:18] That unmatched feeling of being surrounded by others who just "get it".

[43:21] Hallie’s goals for the future and how she continues to channel her experiences to support others. 

Links & Resources:

NJCTS Advocacy Page: https://njcts.org/help-restore-our-funding/ 

Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.

Transcript

Michael Leopold: 0:00

Hey, everyone, before we get into today's episode, I need to share something really important, the NJ center for Tourette Syndrome, the organization behind this podcast, is at risk of losing its state funding, and that funding makes this show possible and so many vital programs at NJ, CTS, the governor's proposed budget would completely cut our support for fiscal year 2026, so we really need your help right now. If you live in New Jersey, please call or email your state legislators and ask them to support resolutions. Senate 167, and 969. And also assembly, 434, and 94 you can visit nj cts.org/restore, for everything you need, there's a suggested script, a fact sheet, a link to find your state legislators. The deadline is June 30. Your voice truly matters. Thank you all so much, and we couldn't do this without your support. Again. For more info, you can find it at NJ, cts.org/restore,

Hallie Hoffman: 1:05

I learned early on that corn and other grains always made them a lot worse, which you know, sort of being older, knowing that those sorts of things do end up converting into sugars. That make a lot of sense. There has been a lot of research on sort of the way that sugars lead to, you know, create, sort of like excitotoxins in the brain that do tend to exacerbate things, such as Tourette Syndrome, OCD, ADHD, those sorts of things. But I do know that there has been research since then that really does go into how that can work. So

Michael Leopold: 1:47

welcome to the uptick brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research, by sharing the stories and experiences relevant to the TS community. Hello and welcome back to the uptick. Today, I am here with Hallie Hoffman, who is Community Manager with reedsy. She does a mix of marketing, community management, project management and user experience. Hallie has been involved with NJC 10 since she was 13. She started as a youth advocate and then also became a coach at the Tim Howard Leadership Academy. She's an incredible resource for our community and just a great role model and advocate and Tourette and adjacent ally and yeah, without further, ado, Hallie, how are you today.

Hallie Hoffman: 2:40

I'm good. Thank you so much for having me on. I've been following along, you know, listening to all of the episodes so far, and really loving hearing so many other people get to share. So I'm very honored to get to be on the podcast myself.

Michael Leopold: 2:55

Well, we're happy to have you on, and our community will appreciate your insights here and your story, and that's really where I figured we could could focus today's time is just talking about your story. You've been involved in the tread space pretty much your whole life, and have been a great resource and advocate for so many others. Would love to start by hearing a little bit about your story, especially those early formative years, maybe when your tics began, kind of that diagnosis story, if you don't mind sharing that

Hallie Hoffman: 3:21

absolutely. So I definitely started ticking from a very early age. I can remember as early as probably five or six doing, you know, lots of I look back at home videos and I notice it. And it was definitely to the point where family was starting to notice as well, when I would be blinking my eyes or sniffing or twitching. And, you know, like many people who are, you know, kids and start developing ticks, it was a constant sense of, why are you sniffing? And I would say, Oh, it's just allergies. Or my parents would say, maybe it's allergies. Maybe she needs glasses, and that's why she's blinking so much. The funny thing is, I did end up needing glasses, but that was definitely not the reason for me. So there were definitely all those sorts of kind of excuses throughout early childhood, as I was sort of trying to laugh it off, while also realizing that something was not quite normal there. And then family picking up on it more and more. And I remember that my mom had mentioned it to our neighbor, who was a neurologist, and he said, You know, it's, it does sound like some kind of TiC disorder or Tourette Syndrome. But you know, you would really want to see if it continues for over a year. If so, you know, make an appointment come and see me and we can chat then. But nothing, nothing to worry about right now. And of course, it definitely continues, you know, mostly even getting worse over the next several years. Years, and yet, interestingly, I did not end up going for a diagnosis until much later, when I was 13. So there was this sense, after having had that conversation and my parents doing their own research, that it did sound like I had Tourette Syndrome, but my parents were actually very hesitant for me to get a diagnosis, because they were worried about me being associated with a labeled disorder, and that was something that I think they felt more comfortable sort of handling it on our own, more in private, not talking too much about and for many years, it was just kind of unspoken in the background that, you know, I had ticks, that I would do things differently. And yet it was not something that I ended up getting officially diagnosed with until middle school, and that was actually something that I decided, on my part, to approach my parents about and say, you know, Hey, Mom and Dad, I think it's time. I really want to go see a neurologist and, you know, get a diagnosis once and for all. Do I have Tourette syndrome? And if so, I want that label, which was a really interesting kind of approach, you know, given that they were more hesitant, and for me, it was, it was important, because I wanted to be able to advocate for myself and be able to, you know, instead of just kind of having some description of, oh, it's just what I do. I wanted to be able to tell a teacher if it ever came up, or tell a peer if it ever came up, this is Tourette syndrome, and to be able to have that diagnosis to back it up. Well, it sounds like when you got that label, that was also around the time you started, pretty much the same time you started your advocacy work. Went to the youth advocacy training with NJ, CTS. So it all sounds like it kind of happened together. It was, and honestly, that was also part of my motivation. Was I wanted to learn more about myself and be able to connect with other people with Tourette Syndrome, other kids my age, and then be able to start advocating. So I found njcts pretty early on, sort of in the process of getting that diagnosis, and I felt very passionate about being able to learn more about myself, connect with others who were going through the exact same thing, and then start to share that. So it was really all kind of in that same year that I got my official diagnosis, connected with NJ, CTS, and then got trained as a youth advocate and started being able to educate others. You know, it's interesting going from like your family not wanting to have that label put on you, and then now you, you made that decision, hey, I want to get that label. I want to be able to and at the same time also saying I want to be able to teach others about it, and I want to advocate for others. That's, that's, it's an incredible story. I was that was that a difficult decision? Or what inspired you to want to be a youth advocate? Yeah, I think it was a little bit of a difficult decision, because obviously I had, you know, had this sense of, I don't necessarily want to have this label with me for the rest of my life. You know, it's not something that has a cure. It's not something that, Oh, it'll go away with this treatment or in this many years. And so it was sort of staring down this, you know, permanent diagnosis. And yet, I think it was interesting, because for me, I did see it as a resource, you know. I think a lot of I think my story is a bit different than many others, in that, instead of sort of being, you know, shocked by a diagnosis as so many students are, as so many even adults are, when they are trying to figure out what's going on and finally make their way into having this diagnosis, which can be scary, relieving, shocking, disturbing, upsetting, you know, an answer any of those reactions for me, I really saw it as a tool at my disposal of if I am going to get the help that I need, but also be able to help others. That's the first step. I mean, makes sense? Yeah, you have a name for it now. And also there's a community around it. Luckily, you lived in the state of New Jersey, where there is such a vibrant Tourette community and that has programming and resources and all of that. And how did you first hear about NJ CTS? Yeah, I don't fully remember, but I do think that my mom had done a lot of research on it, after me sort of going to her and saying that I really wanted to diagnose. This. I wanted to learn more about what Tourette Syndrome actually means, and she had been doing research. Came across the New Jersey Center for Tourette syndrome, and I think I remember her emailing me a link to their youth advocate program with a little like any interest in this. And it was an immediate yes from me. So I signed up for that, and I did the their training, and it was just that sense of, this is where I need to be. This is what I need to be doing. Yeah, you

Michael Leopold: 10:33

kind of just know the feeling like, when you when you say, it's like, oh, this just makes sense. It aligns with my background, with who I am, this, this thing that I have, and it's a great way to get involved and to just feel like you're I don't know, it's quickly for me, it became an extension of myself. I like public speaking, I like volunteering, I like advocacy, and, oh, I have this. So just kind of made sense to for this to be an outlet of the work I would that I wanted to do, and a way to also kind of do self discovery and learn more about myself too through the process. So you went through this. You were a youth advocate for a number of years, became a coach of the Tim Howard Academy, then eventually went on to college. You were a philosophy major. What are some of the big things you attribute to your success as an adult?

Hallie Hoffman: 11:14

Yeah, that's a fantastic question. I think that definitely finding njcts So early on, was so helpful for me, because I was able to, you know, have this experience of connecting with other people around my age, but also older, and see this whole range of people who were just getting diagnosed, people who, you know, were A couple years into that, and people who were adults living successfully with this diagnosis as well. And I think having that, you know, experience of being exposed to people all with Tourette Syndrome, but with a really diverse set of experiences and identities and where they're at in life was so encouraging for me, you know, to know that I wasn't locked into any one identity or anyone you know reality with that. And I think that also being able to learn self advocacy as a youth advocate was something that from even, you know, looking back, I'm still shocked that I was 13 and standing up in front of hundreds of people sharing my story. You know, sometimes adults, teachers, doctors, police officers, who are so much older than me and me being able to share my story, and I think that especially the way that njcps provided that training made it feel so accessible, so empowering to do that in a way that I have carried with me through the rest of my

Michael Leopold: 12:58

life. It's amazing to hear that. Yeah, the training is great. I went to the youth advocate training a number of years ago, and just I for any of our listeners that may feel like that this is daunting or intimidating, or like, I can't do that. Like, we will meet you where you're at. The organization has so many ways to get involved, so many resources if you're like, I don't want to talk to doctors, but I would talk to kids and people my age. Great. We'd love to have you on board, like, there's always ways to get involved, and Hallie has definitely taken, you know, full utilization of what you can do in this community. And we love to see that, you know, just getting involved, putting yourself out there, and there's so much to be had and to benefit from, but also so much to give to. And you could those kind of become one in the same as you, as you get into it. So now you're, you're,

Hallie Hoffman: 13:44

how old I am, 2525

Michael Leopold: 13:47

now, wow. So that's crazy, because I think when I met you, you were like, I don't know, 16 or something like that. It's been, yeah, it was like, I think it was either 2016 or 2017 Tim Howard Academy, I was a coach, and I remember meeting you that year, one of those two years. But what are things like now? You know, in terms of Tourette co occurring conditions, what's what's your life like now?

Hallie Hoffman: 14:07

Yeah, I mean, I definitely still have Tourette syndrome. I will say I feel like my ticks have gotten more mild over the years, or at least they've changed quite a bit. So ticks that I used to have, I'd say when I was younger, they would fluctuate a lot more, where each month a new tick would show up. Here, I think now they're much more stable in terms of, I kind of have the same set of ticks that I have had for a number of years now, which which is nice in a way that they're less surprising to me than they used to be at the same time, you know, it's very just a steady kind of background noise for me that I've gotten very used to, and I think quite comfortable with for the most part. It is definitely different now, in the sense of I used to talk about it more. I think, and now it's one of those things where I don't really bring it up in my work. I don't really bring it up when I meet people who are new, unless it kind of comes up naturally, and I'm okay with that. You know, that I used to feel like, you know, originally, I felt like I had to hide it, and then for a while I felt like I had to sort of shout it from the rooftops and tell everyone and really be that good advocate. Yeah. And now it's sort of, you know, my choice of maybe it comes up with someone who I've just met and I share it. Maybe it doesn't, and that's okay.

Michael Leopold: 15:38

Similar here, actually, I've noticed the same where, as I got older, my tics definitely became more stable. And I don't get the new tics as much. It's more kind of the same. I don't know 789, tics or so that I'll get, and I was often more motor tics, rather than than verbal and vocal tics, but that stayed the same. I mostly still have you know, my kind of some, some of the motor tricks I've had now I've had, literally, since I was in, like, I don't know, fifth grade, sixth grade, and it's like, I guess they're probably just here for life. Now, you know, did you ever do see bid or any, any kind of intervention like that? Yeah,

Hallie Hoffman: 16:13

so I never really did any official interventions like that. I can tell you that definitely, I had read a lot about them and was interested in them for a while. I'd sort of looked into them, and I even have played around with just sort of my own ways of taking a tick that was really disruptive and trying to turn it into something a little less disruptive, or taking a tick that was very painful to me and trying to shift it so that it, you know, still fulfilled the same neurological, physical need without being quite so, you know, physically harmful or painful. So I didn't end up doing any sort of official interventions. I did do a fair amount of sort of alternative things. I played around with diet for a while. That was something that my mom, with sort of a nutritional background, was really interested in, especially when I was younger, seeing, sort of how food and things like sugar can actually impact ticks and, you know, the extremity of them, and then also just working with a lot of getting to know personal coping mechanisms, whether that was, you know, making sure that I had time to decompress, you know, to avoid stimulation when I was feeling really over stimulated, to focus on things such as music or some kind of task. If my tics were getting really bad that it could just sort of take my focus off of them. I always found things like that very helpful,

Michael Leopold: 17:47

directing our attention and focusing, yeah. I mean, a lot of that is kind of the what underscores seabed. And like, the theory of seabed is, you know, being aware of your body and being mindful, and then, yeah, doing things that kind of, in a way, sort of distract yourself, yeah, and that mindfulness goes a really long way, because I find that with my tics now, this is also something I just like, I sucked at this as a kid, like, I tried CBIT, and maybe it was like, I didn't have a My therapist. I was the first ever see but person he had ever done it with, he like, went out and bought the book, like, God, love him, but yeah, he like, bought the TAA book, and was, like, trying to teach himself, and he's a social worker, and we would meet, and after like, a couple months, I'm like, You know what? I don't think this is for me at this time, and I have mixed feelings about that. Actually, we're gonna have an episode, hopefully before too long on just focused on C but I'm gonna try to find a group of people who, like, benefited from it, and then others that had, like, a more complicated or relationship with it, or just it didn't benefit and and kind of have a little dialog, like round table with a psychologist in that but, you know, it works for people. But I think a lot of these things that you can take bits and pieces of them and and like, incorporate them in ways that help you. So for a lot of people, the relaxation is super important being aware of like, hey, how am I feeling? Is my body tense? Like, where? What's my posture right now? That goes a long way just knowing like the situations when you tend to tick more. I will say this to any children that are listening like this got way, way easier for me when I was an adult. Like it is so true that you're like, prefrontal cortex develops as you're in, like, your mid to late 20s. Because I cannot put it into words other than to say that, like it something changed, things that used to be very difficult for me, like knowing, becoming aware of how my body was, where I like when I was ticking a lot. Or, I guess I always knew when I was ticking, but I was really bad at redirecting my attention, stuff like that. Honestly, in my case, just got easier when I turned 2728 29 years old, and, yeah, all I can attribute it to is like your brain changes. The brain's plastic. We we grow, we evolve, and, and, and, like some of this stuff, just got easier. So to any people out there that are just like younger and you're stressed about this stuff, like, cut yourself some slack. You know, take from the wealth of resources what you can and what you need to thrive, but know that, like you're you're gonna evolve as you go through life, and some of the things that help you now, and you may find other things that help you in the future, or you may revisit something that you had kind of overlooked in the past, because suddenly it's something that you can actually do a lot more easily now. Like now I'll say when I get a tick coming on, like a new tick, and it's like, oh, oh boy, here we go again. I'm gonna have another two weeks of the whole roller coaster with the tick. Sometimes, not always, but sometimes I'm able to ward it off by distracting myself in those first couple days when I feel that that tick kind of spiking again, not always, but if I am able to redirect my attention, and it's hard to do, but sometimes I can actually prevent, like a, you know, a two to three week increase in ticks just when I start noticing its spike in those first couple days, something I have found that I just didn't have That ability as a kid, but now I kind of do also. My tics are, I don't know me, I don't know if they're more mild than they were as a kid. They they still wax and wane. But like, like Hallie said, I've noticed a lot more stability with it, for

Hallie Hoffman: 21:13

sure. No, it's so interesting. You bring that up, because as I think about it, I definitely have developed such a better awareness as I've gotten older, that I think when I was young, it would be hard to say what would trigger an outburst of ticks, or what would really make them so much worse, and it would, it would feel so out of my control of I've no idea why my tics are so bad today, when they were barely there yesterday, and I feel like it's so much easier as an adult to sort of see those shifts and really listen to, oh, you know what, I am sleep deprived or oh, I'm over stimulated. And this is why that's happening. And here's what I can do to take care of myself. And I also feel like, you know, there's a lot less of the social pressure of in middle school and high school, you know, a new tick emerging feels like end of the world. All these kids are gonna notice. And you know, as an adult, that's also different. Where you know, whether it's coworkers who've known me for a while, you know my partner who's known me for a while, friends who've known me for a while, it's just it's less stressful for something new to

Michael Leopold: 22:25

emerge. Did you have any experience with CO occurring conditions? Yeah.

Hallie Hoffman: 22:30

So I definitely have always had, you know, a lot of OCD I've had anxiety. And you know, as as I feel like a lot of people with those co occurring conditions always say it's, it's hard to know where one stops and the other starts. So there was always that sense of, you know, the OCD and Tourette's combining. I would do a tick, and then, you know, my OCD would pop in and say that I did, you know, it wasn't satisfying enough, or I didn't tick in the way that I was supposed to tick, you know, like, if I I've always had a lot of ticks with my joints and cracking them, and then, you know, that's obviously more of a physical thing. But then mentally, if it didn't make the right sound or feel exactly right, then it, you know, I had to keep doing it, or doing doing it a certain amount of times, things like that, which I think is also something that I've gotten more and more aware of over the years, that used to bother me a lot more, and now, you know, it's easier to sort of handle them on on a slightly more separated basis.

Michael Leopold: 23:35

Makes sense? Yeah, definitely, my resilience has gone up as an adult, too. And just the tolerance for these things, and kind of, yeah, you kind of do, I don't wanna say, get used to it, but in a way, you sort of like build that, that kind of like resilience muscle as you go through life. You had mentioned earlier about diet and experimenting some with diet, and obviously, sugar, caffeine. I think a lot of people in our community are familiar with the effects of that on ticks. Did you learn anything, or have any interesting discoveries beyond that, in terms of how diet affects your your your Tourette and CO occurring conditions? Yeah,

Hallie Hoffman: 24:07

I think, you know, it's funny that definitely we would do a lot of like experiments when I was young, of just trying out different foods, you know, going off of them for a while, going back on them. I learned early on that corn and other grains always made them a lot worse, which, you know, sort of being older, knowing that those sorts of things do end up converting into sugars that make a lot of sense. There has been a lot of research on sort of the way that sugars lead to, you know, create, sort of like excitotoxins in the brain that do tend to exacerbate things such as Tourette Syndrome, OCD, ADHD, those sorts of things. Obviously, this was many years ago, and it was just sort of a trial and error experience on, you know, the part of myself and my family. But I do know that there has been research since then that really does go into how the. Can work at the same time. I do think it's also a very personal thing. You know, I know that we've had some funny conversations at the academy where half the people say that caffeine makes their tics way worse. The other half of people are like, that's weird, because coffee generally tends to make my tics so much better. Yeah. So, you know, there's definitely a lot of variation Person to Person of just what, what makes sense for you and what works with your unique brain.

Michael Leopold: 25:27

It's true. And, and these things kind of change as we go through life too. Like even in adulthood, you know, I find tinkering with medications or, like my my tolerance regarding caffeine, like, changes depending on where I'm at in life and or how much I consume, really, but, but, like, all of these things are kind of, they're dynamic, and it's, it's something to, you know, the to continue thinking about as you go and like, it's a little frustrating, because sometimes you'll find you've, like, you think you've got a good, good control, or good, good management, I should say, of your, of your ticks and Coker, and then all of a sudden it doesn't work anymore. You get a new tick, or something comes up and it stops working. You're kind of trying it again, but, but over time, I think things do tend to work out for people, and you kind of find, like you said, what works for, you know, your family when you were prior to being diagnosed, and then during that, what was your family like with regard to the ticks and everything?

Hallie Hoffman: 26:18

Yeah, so, you know, I think that my family was overall, incredibly supportive. They always wanted what was best for me, and it was never something that was really, you know, stigmatized in my family. I was never told, you know, just stop doing that or anything like that. But I think what was sort of the, the main stressor was that they didn't want me to grow up feeling weird or feeling like there was something wrong with me. And so that was definitely a big motivator in them not having me get an official diagnosis of kind of wanting it to be a sense of, oh, you know that that is just something that you do, and that doesn't mean that there's something wrong with you. And I think that that was beneficial in so many ways, but it was also really important for me personally to be able to say that I did want that diagnosis. I wanted to actually, you know, I don't see a diagnosis as saying that there's anything wrong with you. I see it as giving, you know, people who have something in common, a chance to access resources that are known by doctors, by you know psychologist, by you know, resources such as Ng, CTS, and being able to tap into that where instead of it being a unique experience, it's something that's shared, which I feel like was really important for me to feel like this isn't just me going through this. This is something that so many kids, so many adults are experiencing, and this diagnosis will allow me to connect to them as well.

Michael Leopold: 28:03

Absolutely like having like to anyone listening like Tourette is is a known, documented research studied diagnosis, and many people have had it. It's understood by by the medical community, like, you're not alone, and this is a it's a real thing that, yeah, that. And there is, there's people that work on this and study it, and study it, and there's support for for those with it. I always tell people take from that that, you know, the medical terminology, like Tourette, you know, it is a label, and labels have pros and cons. And I think that you can take from that label what you need to thrive. I think the label can be kind of your gateway to getting accommodations, to getting treatment options, therapy, medication, or, as you pointed out, Hallie, like the social aspects of it as well being part of the community and meeting other people with it, finding role models, mentors, it's a gateway to that as well. And so, you know, it's an individual choice and decision, like, to what extent you you want to get that label, or to how you relate to that label. But I would tell people, yeah, don't feel bad about the label like it is. It can mean so many different things, and it doesn't, doesn't mean anything's wrong with you, you know. It's only, it's only wrong in the sense that we've, we've built a neuro typical world where you're expected to do certain things, behave a certain way, and if you don't, you fit outside the norm. Then, you know, then you're, you're, quote, unquote abnormal, you know, but beyond that, like there's nothing, nothing inherently wrong with having a tic disorder, and we're just people and but, yeah, but it can help you with with getting with understanding yourself and meeting other people. And if it can open those doors, then that's, that's great.

Hallie Hoffman: 29:37

I think that there's a lot of, you know, there's definitely a sense of these days, I think that there is an aspect of like over labeling, but at the same time, it can be so helpful to just have a vocabulary, have a toolkit to build off of, you know, I kind of see it in the same way that I feel like, you know, especially in recent years, people talk about the kinds of learners that. They are, you know, oh, you know, I'm a very visual learner. I'm a hands on learner, I'm an experiential learner, I'm a theoretical learner, all those kinds of things. It feels similar to me in the sense of that is just a way that I interact with the world, that my brain works, that my body works, and it's helpful to be aware of that, so I'm not in the dark trying to figure out what I need, but instead, can really use that to say, oh, okay, you know, this has worked for other people with that same label, with that same disorder. Maybe it'll work for me too. Or here's a great jumping off point for me to get the resources that I need, or to even share my needs, like you brought up accommodations, and that was something that was also very motivating for me to get diagnosed, was knowing that I may need to take advantage of accommodations in the future, and I wanted to be able to go about that, and, You know, have a diagnosis that would support me getting any accommodations that I needed

Michael Leopold: 31:06

absolutely and, yeah, it can really be a gateway to a lot of these things. And I think earlier you've mentioned kind of the theme of like resources, and part of your story has been around connecting with these resources and then connecting others to them. We've mentioned NJ CTS, of course, the Tim Howard Leadership Academy, the youth advocacy training. We'd love to hear you share a little more about kind of the role of these resources and being a person with Tourette. Yeah,

Hallie Hoffman: 31:32

I think that resources have been everything for me on this journey that I've been incredibly lucky to have found NJ CTS from the start and have them be the jumping off point for connecting, not only with, you know, resources for myself, to be able to get trained as a youth advocate and really learn more about myself in that way, but to meet so many incredible other kids, other adults with Tourette syndrome, and then hear about everything that they've done. So knowing, you know, I think it was something that was so helpful for me, especially as I did get older, to be able to think about how to go about getting accommodations in high school, in college, you know, considering how I would want accommodations in the workplace, or disclosing it in the workplace, disclosing it in relationships, disclosing it, you know, out on the street, do I choose to do that? Do I not choose to do that? And all of those things are, you know, things that I do, you know, hope that I would have been able to figure out on my own, but I think it would have been so much rockier, so much more stressful without that community support behind me. You know, even something like the way that NJ CTS has a whole list of doctors. And, you know, yeah, referrals, they can refer who are specialized in this. I think that that was something that was so shocking to me, and yet it makes so much sense that even though we want every doctor to know what Tourette syndrome is, and be able to handle it, even though we want every therapist to be able to, you know, have someone come in and say, I have Tourette's and be like, okay, cool, that's just not the case. That there's still plenty of professionals that either are not aware of exactly what it is beyond just a definition, or really have never had the experience of working with a patient who has and so having you know, like I said, NJ CTS is referral list, knowing that these are professionals who other people with Tourette Syndrome have had positive experiences With is so helpful, like it's just that added level of comfort knowing that you could rely on that, but also feeling like, you know it's not you're not just like looking around in the dark trying to find resources that there's a verified list of you know, people that could be part of your support system.

Michael Leopold: 34:22

Absolutely and reach out to njcts. To any of our listeners here, if you want that referral list, I will add that they're not necessarily like, we're not limited to the state of New Jersey. There are some that do remote counseling, remote therapy. There are some in other states. So you know, if you don't like, I grew up in Indiana, and was hard to find a therapist back then who knew about Tourette, and we would drive into Chicago and, you know, find the closest big city because, yeah, in my neighborhood, we just didn't. There wasn't much known about it then. And this is things like, where those, those referral and provider lists can be so crucial and just save your you and your family a lot of time and stress. Going through it. The final thing I would add on it is that, like, I think, being a part of these communities also almost imbue you with kind of a confidence and a strength. I mean, in theory, you don't need the label, you don't need to get a diagnosis. Like you could just try to navigate this on your own and do some Google searches and find things on your own. And you could, in theory, do that. I think one area that would be hard to replicate would be that the confidence and sense of community that comes with being a part of something like this, there really is like just meeting people, and like you said at the beginning, meeting people from different walks of life. You like going to the Tim Howard Academy. You're with high school students. You're also with the coaches, who tend to be in their you know, in their 20s and a few years of work experience, we have the presenters who are older adults that have been in the workforce longer, many of whom do have to read or a tic disorder. So you get to see people across kind of the full spectrum, and I don't know, there's sort of an energy or kind of a confidence building effect just by being in that room, by being in those spaces that I don't think can be replicated elsewhere. So that's something else I always recommend with people looking to, you know, or considering some of these things, considering getting more involved, or considering getting that diagnosis, it really can be the gateway to more confidence and support in a lot of ways.

Hallie Hoffman: 36:18

Absolutely, I think that that was, I didn't even realize what a refreshing experience it would be until I was sitting in a room for the first time ever with a whole group of people my age, who all had Tourette syndrome, and it was just this overwhelming feeling of they Get it.

Michael Leopold: 36:39

Yeah, yeah. It's like, you it's almost in your head, you can kind of relax a little bit. There's kind of like an inner peace that you find it's like, oh, like, I still have some embarrassing tics. I have tics involving, like, my fingers in front of my face. And even, I'll be honest, even in Tourette circles, I don't like doing those tics because, like, they look weird. They're kind of embarrassing. But I will say, if I got to do that tick anywhere it I would, I really, I'm, I'm more or less okay doing that in front of people with Tourette who get it, who will just assume, Oh, that's a tick. Like, I don't even need to disclose. There's like, they know I have Tourette, so if they see me do something with my hands, like, they're gonna say, Oh, he's just ticking. And there's, there's a piece with that, knowing that I don't have to explain it, I don't have to disclose or don't even feel the pressure to, you know, even if, yeah, disclosure is always a choice, but, but to not even feel the pressure to disclose is also very nice. I'm curious. You mentioned your partner and your colleagues at work. What does disclosure look like for you these days? Probably like if you said you don't disclose on day one, you know, what's kind of been, your your approach to that as you've gotten older?

Hallie Hoffman: 37:43

Yeah, so I think that I'm definitely in the position that I know some but certainly not all. People with Tourette Syndrome are in that as I've gotten older, it is much less noticeable. So unless people are with me every day for, you know, extended periods of time, for the most part, like, when it comes to coworkers, I work remotely, and so, you know, on a Google meet call a couple times a week, they're not really going to be noticing things, or if so, it's going to be something that I think wouldn't even really cross their mind. Obviously, that's different, you know, I feel like, if I'm spending time with with people, for, you know, a much more extended basis, and they are more likely to notice things. But at the same time, the way that my tics present these days are much more natural, that it could be some kind of oh, she just does that. I do feel like I do still like disclosing, especially to those who I'm very close to, because it is a big part of me that it is such a big part of me beyond just this is what I do, but also being able to share my story, being able to talk about the ways that having Tourette Syndrome has impacted me as a person. And I feel like if you know, friends or family or my boyfriend didn't know about that, that they would be missing a really crucial part of me, you know, at the same time, I always joke with my boyfriend. I had told him a couple months in, you know, when it came up, I was like, Oh yeah, I don't know if you've ever noticed me ticking. I have this thing called Tourette syndrome. And he was like, I haven't noticed anything. And for the next, like, two months, he still was like, I really, I know you say you have Tourette Syndrome, but and I was like, and yet, I'm taking all the time with

Michael Leopold: 39:35

you. I know I've gotten that before. I'm like, Are you not even watching me? Of course, part of me is kind of, like, almost, almost offended. I'm like, Hey, do you have any idea how much this is on my mind? No, not, not really, but it's, but it's like, I am ticking a lot, and it surprises me when I get, I get that response as well from people I didn't even notice you had it. And I don't know. I'm sure, I'm sure, like, 50% of them are just lying, like, just trying to be nice, and like, Oh, I didn't notice. It, but there's probably the other half that really didn't notice it. And like, you know, yeah, I do

Hallie Hoffman: 40:05

also think that that's something that, and I always say this, especially to those who are younger and in school, when dealing with ticks, that as you get older, there is more of a sense of people just don't care as much that, like when you're young, anything that makes you stand out or sets you apart seems very noticed, like everything you know, a middle schoolers dream is like to not be noticed for being Yeah, just, just yeah, you know, I think that. And yet that's something that as as younger kids, were constantly looking at things, you know, and I can remember so many interactions when I was in school with kids who were, you know, they had no bad intentions, but kids are curious. And so I'd be like, What are you doing? What is that? Why do you do that? And that's something that, for the most part, as adults, don't really, do you know, it's not really socially accepted that another adult is going to walk up to you out and about, you know, at the grocery store, at a bar or restaurant, and be like, so why are you twitching? Yeah, it doesn't happen like

Michael Leopold: 41:14

that. Yeah, if anything, they would feel weird, uncomfortable doing that. I do get, actually, this happened the other day I was, I was, I was walking down the street, and I'm ticking because I don't know, I was excited about something. I think I was texting somebody, and I so I get going, and I'm, like, ticking, and I get these, like, they're the, like, dystonic, oh no, I'm embarrassing myself with not knowing the word that the name of the tick that you like, hold it for a while. It's not a, is it a dystonic? I have to Google this right now, or else I'm gonna embarrass myself. Dystonic tics. Yes, that is it. So I had a dystonic tic, and I don't know, so I was just like holding my like hand, like, kind of in front of my face, and you could tell, like my arm was tense, and there was someone walking by, and they were just like looking at me, and then, like, I looked at them, and they look away, and nothing happened. I don't know. Like, in cases like that, it didn't matter, I did. We just kind of kept walking and went on my way. If anything, they may have been concerned, like, is this guy? All right? You know, I didn't think it, but I sense like, a little bit of just curiosity on their face. And if they weren't a complete random stranger, just like walking, I maybe I would have stopped and talked about it, but I don't know I was, I was on my way and in my bubble, and I just kind of, like, kept going, and that's how I find it goes a lot, at least for me, in life as an adult, like, I will tick. Maybe someone looks at me, maybe they stare a little bit, but we just kind of keep going. Rarely do they ask me, and I don't know, I'm sure if I had more audible ticks, or if I was ticking more frequently, you know, I might have a different reaction, or it might solicit a different reaction. But I find, like you said, most people just kind of, they're doing their thing. They're on, you know, their mind is on, whatever their mind is on, and they're just, you know, yeah, they might look at it, and then they forget and go about their day. But great. Well, one last thing, want to check in on. It. Would love to hear you share any goals you have, any aspirations you have. I think it's important for people in our community, especially young people, listening just to be like, I can be that someday, or like, oh, I that resonates with me. You've done so many things already. I would love to hear kind of what's what's next in life for you, in terms of your goals and aspirations, professionally or otherwise? That's such a

Hallie Hoffman: 43:21

good question. And the really honest answer is, I'm still figuring it out. I feel like that. It's a great answer, yeah. I think I'm in one of those places where I do have so many different interests and passions, and I do have this big drive to be able to help people. I think that, you know, one of the things that I've always done as, you know, as a youth advocate, but also, even just academically, I was always a tutor throughout high school and college, and I loved that, and I loved working with, you know, young people, people my age, people younger, and helping them out. And I think that's something that I'd love to get back to in some way, shape or form, but I really am kind of at that open ended space of I'm, you know, 25 years old, and I really enjoy where I live and where I work, but I'm also constantly looking for new opportunities to to to figure out what is next and what do I want to do? I think one of my goals is definitely I would love to write a book. I've always been a huge reader and writer, and I think that is definitely on my horizon. Other than that, I think really just diving into what makes me happy, and looking for new experiences and feeling like I am at a spot where I can get a lot out of life, and then also, you know, as much as I can, I would love to keep sharing anything that I can with others and supporting them as well.

Michael Leopold: 44:55

Well put all we wish you all the best in your endeavors and. And thank you so much for being on the uptick.

Hallie Hoffman: 45:02

Thank you so much for having me.

Michael Leopold: 45:06

Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life. You