The UpTic

In this episode of The UpTic, I'm joined by two amazing sisters, Emily and Amanda Muldowney, who open up about what it’s like to navigate life when one sibling lives with Tourette Syndrome—and the other doesn’t. Emily, who has TS, ADHD, and anxiety, shares her journey from struggling to understand her tics to becoming a fierce advocate. Amanda, her older sister, brings a heartwarming and grounded perspective on what it means to support someone you love through all of life’s highs and lows. We explore the strength of sisterhood, the power of humor, and the resilience that comes from facing adversity with someone who truly gets you.  Episode Highlights: [0:52] Back after a hiatus—why this episode feels extra special [1:39] Meet Emily and Amanda: sisters with a unique bond [2:26] Emily’s long road to getting a TS diagnosis [4:24] How a tough childhood forged an unbreakable sisterly bond [6:08] The ways Amanda shows up when Emily needs her most [9:05] Adjusting to life apart when Amanda left for college [10:53] Why school is tough—and how having a sibling helps [12:38] Amanda shares what others may not see in Emily's TS journey [15:00] The balance between strength and vulnerability [17:42] Amanda on advocating through education [19:29] Emily’s boldest tics—including movie theater moments [23:07] Managing co-occurring conditions like ADHD and anxiety [26:18] Emily: “Tourette’s is my best friend” [28:17] Discovering who your real friends are [30:49] Amanda reflects on Emily’s incredible growth [34:27] Emily’s advice to anyone newly diagnosed with TS  Links & Resources: 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. Send us Fan MailSupport the show

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.Send us Fan MailSupport the show

Hey everyone, Michael here! In today’s episode of The UpTIC, I’m joined by Lorenzo Tiozzo, a passionate advocate who’s navigated Tourette Syndrome across two continents. Lorenzo grew up just outside Venice, Italy, and recently graduated from the University of Florida with a degree in Telecommunication, specializing in Film and TV Production. He’s also part of the Rising Leaders Program with the Tourette Association of America—and he’s on a mission to inspire others through storytelling, media, and his personal experience with TS.We talk about everything from cultural differences in awareness and support between Italy and the U.S., to his bold decision to move abroad, the challenges of acceptance, and how music and film became his therapy. This is a heartfelt and deeply personal conversation about identity, growth, and the power of advocacy. If you’ve ever felt like the only one in the room—or the world—facing a challenge, you’re going to connect with this episode. Episode Highlights: [0:52] Introducing Lorenzo and his background growing up near Venice and studying in the U.S. [2:21] What it felt like returning to Italy after years in Florida. [3:26] Lorenzo’s childhood dream of studying in America and his passion for film. [4:59] First impressions of the U.S. and adjusting to cultural differences. [5:27] Discovering and being diagnosed with Tourette Syndrome in Italy. [8:22] How boarding school helped him gain independence and self-acceptance. [10:28] Choosing a major in telecommunications and film and pursuing creative dreams. [11:39] His advocacy journey and the powerful experience of joining the Rising Leaders Program. [14:10] Speaking on Capitol Hill and the impact of meeting others with TS. [19:20] Challenges in building awareness and breaking stereotypes about Tourette’s. [22:31] Lorenzo’s advice for kids facing bullying or isolation due to their tics. [24:16] Social media’s role in increasing visibility for TS in Italy. [28:09] How co-occurring conditions like ADHD and OCD impact daily life. [33:59] The healing power of sports and music in managing symptoms. [36:46] Final thoughts and advice: talk to someone, find your support system, and don’t be afraid to share what you're going through.  Links & Resources:Lorenzo Tiozzo on LinkedIn: https://www.linkedin.com/in/lorenzo-tiozzo-caenazzo-3b654228b/ 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.Send us Fan MailSupport the show

In this episode, I’m joined by Dr. Christine Conelea, a brilliant research psychologist from the University of Minnesota, who's leading the charge in cutting-edge research around Tourette Syndrome (TS), OCD, and anxiety. We dive into the transformative innovations happening in her lab—from developing computer vision tools that can detect tics via video recordings to clinical trials testing the effectiveness of CBIT and brain stimulation therapies like TMS.Dr. Conelea shares how her team is using AI to identify motor and vocal tics and how this research could improve diagnostic access for people across the country. We talk about what’s happening in the brain during tics, how treatment like CBIT and TMS might actually change neural circuits, and the importance of tailoring interventions based on the person’s profile.  Episode Highlights:[1:00] Meet Dr. Christine Conelea—cutting-edge researcher from the University of Minnesota diving deep into TS, OCD, and anxiety.[2:20] Why diagnosis delays are such a problem in the TS community—and how her lab is using AI and video data to solve it.[6:46] How you can participate in their research by uploading videos from the comfort of home.[8:30] The vision: a diagnostic tool that supports clinicians with objective data from simple video clips.[13:50] CBIT’s roots and Christine’s journey into TS research—from grad school basement to leading national trials.[18:40] Exploring why CBIT works for some but not others—how brain inhibition plays a role.[22:20] A personal story on why I (Michael) stopped CBIT as a teen and thoughts on revisiting it now.[26:25] The role of TMS (transcranial magnetic stimulation) in strengthening the brain’s “brake system” for tics.[30:48] Can therapy and TMS reshape the brain? What the early data is showing us.[34:46] Applying the same neuroscience-driven approach to OCD treatment with ERP and TMS.[40:33] Advice for newly diagnosed families—and the power of education and demystifying TS.[42:47] Superpowers in the TS community—how a stronger “habit system” might explain our gifts in music, sports, and more.   Links & Resources:Dr. Conelea's professional page - https://med.umn.edu/bio/christine-coneleaMnTiC Lab - https://ticlab.umn.edu/Checking out ongoing clinical studies - https://ticlab.umn.edu/research 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.Send us Fan MailSupport the show

In this episode, I had the honor of sitting down with Dr. Marla Deibler, a licensed clinical psychologist and expert in behavioral and cognitive psychology, to explore a topic that's not only often misunderstood but deeply important: Body-Focused Repetitive Behaviors (BFRBs). These include things like hair pulling, skin picking, and nail biting — behaviors that are frequently dismissed or minimized, but that can significantly impact a person’s emotional and physical well-being. Dr. Deibler brings warmth, clarity, and a wealth of clinical knowledge to help us better understand what BFRBs really are, how they function, and the crucial connection they share with Tourette syndrome, OCD, ADHD, and anxiety. This conversation touches on the science, the stigma, and the strategies for support. Marla Deibler, PsyD, ABPP is a Licensed Clinical Psychologist, Board-Certified in Behavioral and Cognitive Psychology, and CEO of The Center for Emotional Health of Greater Philadelphia. She is a nationally recognized expert in anxiety disorders and obsessive-compulsive and related disorders. Dr. Deibler currently serves as faculty member of Behavior Therapy Training Institute (BTTI) of the International OCD Foundation (IOCDF), President of the Board of Directors of OCD New Jersey (OCDNJ), the NJ affiliate of the International OCD Foundation, Consultant for the New Jersey Center for Tourette Syndrome and Associated Disorders, Visiting Clinical Supervisor at the Rutgers University Psychological Services Clinic, and as a member of the Executive Council for the Association for Contextual Behavioral Sciences (ACBS)OCD Special Interest Group.Episode Highlights:[0:40] Welcoming Dr. Marla Deibler and kicking things off with the basics of BFRBs.[1:53] Breaking down what qualifies as a BFRB — it’s more common than you think.[2:10] Exploring the link between BFRBs, Tourette syndrome, OCD, ADHD, and anxiety.[3:02] How genetics, behavior, and environment all play a role.[6:18] Tackling the stigma and shame that often surround BFRBs.[6:53] Why CBIT and Habit Reversal Therapy work — and how we adapt them.[9:03] A look into diagnostic assessments and whole-person treatment planning.[11:16] Addressing shame through compassion and community-based support.[21:41] Comparing how BFRBs manifest differently in children vs. adults.[25:15] Tips for parents — how to approach these behaviors with sensitivity.[27:09] Where we are with research, treatment, and what needs to improve.[30:45] Medication, brain science, and how BFRBs differ from tics.[35:39] Nonprofit resources and communities that offer specialized support.[37:01] Final words of encouragement — you’re not alone, and help is out there.Links & Resources:Connect with Marla:Website:  https://thecenterforemotionalhealth.com/ Facebook:  https://www.facebook.com/thecenterforemotionalhealth Instagram:  https://www.instagram.com/ceh_philadelphia/ “X”:  https://twitter.com/DoctorDeibler LinkedIn:  https://www.linkedin.com/in/marla-deibler-psyd-abpp-a220851a/ BlueSky:  https://bsky.app/profile/doctordeibler.bsky.social  Marla Deibler’s Book: The BFRB RecoveryWorkbook:  Effective Recovery from Hair Pulling, Skin Picking, NailBiting, aSend us Fan MailSupport the show

What happens when you receive a life-changing diagnosis at 16—and decide to turn it into your superpower? In this episode, I’m joined by the incredibly driven and insightful Sree Lakkamraju. She’s a high school senior, NJCTS Youth Council member, TAA Youth Ambassador, and soon-to-be NYU student. But beyond the titles, Sree is someone who’s turned self-awareness and advocacy into action, and her journey is nothing short of inspiring.We dive into her late diagnosis of Tourette Syndrome, how she navigated disclosures at school and with friends, and the powerful moment when she realized this wasn’t something to hide—it was something to own. From her experiences fencing, speaking publicly, and interning at Mass General Hospital, Sree has found a voice that’s helping educate, empower, and encourage others. Episode Highlights:[3:45] Biking, blinking, and awkward questions: how she explained her tics pre-diagnosis.[6:33] The moment of clarity: getting the official diagnosis and what it meant to her.[8:24] Disclosure struggles and the classroom experience that left a lasting mark.[10:03] Discovering NJCTS and TAA—and realizing advocacy could be a superpower.[12:19] How Tourette’s helped shape her confidence and public speaking skills.[14:15] The speech that changed everything and what it means to find your message.[16:52] Life outside of advocacy: fencing, leadership roles, and staying active.[19:55] Why fencing became complicated—and how she plans to get back to it in college.[21:14] Cold emails and big dreams: interning at Mass General Hospital.[24:54] Insights from OCD/Tourette research and learning the ropes of a real lab.[25:49] Looking ahead to NYU and life in NYC as a new chapter begins.[28:26] Disclosure done right: different reactions from two very different school settings.[31:33] Humor, boundaries, and knowing when to step into advocate mode.[34:19] What it was like meeting 60+ other youth with TS at a TAA conference.[37:19] Sree’s advice for those newly diagnosed—and for those supporting someone with TS.[40:10] A final word on empathy, advocacy, and the value of finding your fire. Links & Resources: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.Send us Fan MailSupport the show

In this episode, I sit down with dancer, choreographer, and advocate Marissa Lazovick for a heart-centered conversation that moves through performance, diagnosis, and the power of self-expression. Marissa shares how her journey with Tourette Syndrome has intersected with her passion for dance, leading to the creation of her powerful solo piece, "(Tic)kled." We talk about what it really means to advocate for yourself, to be understood, and to turn something challenging into something beautifully human.Marissa opens up about everything from being diagnosed in middle school to coping with tics in college life, and how dancing—not just physically, but emotionally—has helped her find a rhythm in the chaos. Her perspective on inclusivity, mental health, and self-acceptance is honest, wise, and inspiring. Marissa is a New Jersey native, now a first year at the Boston Conservatory at Berklee, majoring in Dance. A dancer since age 5, Marissa recently choreographed and danced to a piece about her Tourette experience, titled, "(Tic)kled. She is also an American Sign Language (ASL) instructor. Episode Highlights:[1:33] Meet Marissa — a New Jersey native, dancer, and ASL instructor with a powerful story.[2:46] The inspiration and emotional arc behind her dance piece, "(Tic)kled".[5:20] Performing across the country and sparking conversations about TS through art.[7:40] Getting diagnosed and the emotional release that came with finally having a name.[10:17] How school accommodations and support systems made a real difference.[12:51] Coping with an uptick in tics during college — what’s helping, and what isn’t.[16:59] Why painting, movement, and solo dorm living are part of Marissa’s self-care.[19:09] From competition dance to choreography—how performance has evolved for her.[22:17] Teaching dance as a form of emotional storytelling and empowerment.[24:56] Finding community through NJCTS and connecting with others who "get it".[27:20] Marissa’s definition of inclusivity—and how it shows up in her life and work.[30:07] Her lifelong connection to volunteering, including ASL education for young kids.[35:38] Advice for others with TS: take it slow, speak up, and know you’re more than a label. Links & Resources:Learn more about NJ Walks for TS on May 17: https://p2p.onecause.com/njctswalk Marissa's Instagram: @marissalazMarissa's piece, (Tic)kled: https://www.instagram.com/reel/DHhePHctTJd 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.Send us Fan MailSupport the show

In this episode, I sit down with someone I’ve known and admired for years—Emily Fleischman. Emily is a nurse at Mount Sinai West in New York City and a longtime advocate within the Tourette Syndrome community. From her early days as a Youth Ambassador with NJCTS to publishing a children’s book about her experience with TS, Emily’s story is one of courage, transformation, and advocacy.We dive into what it was like being diagnosed with Tourette and OCD as a child, how that affected her family dynamics, and the coping strategies she picked up along the way. Emily opens up about everything from therapy and medical massages to what helped—and didn’t help—her manage her tics over the years. We  have a conversation packed with insights for parents, professionals, and anyone walking the TS journey. Emily Fleischman, RN is a New Jersey native and NYC based nurse. Having grown up with TS and OCD, she brings personal and professional insights to our discussion, which centered around her story, including her diagnosis, family, tic management, and tips/advice for those with TS. Episode Highlights:[0:34] Getting to know Emily and her connection to NJCTS.[1:54] Emily’s early diagnosis and the challenges that followed.[4:00] Family dynamics and what it was like for her brother.[7:05] Struggling in school, holding in tics, and reaching a breaking point.[9:50] Becoming a Youth Ambassador and finding her voice through advocacy.[11:39] Writing a children’s book about Tourette to reach younger audiences.[13:50] Nursing career journey and the role empathy plays in her work.[15:15] Educating hospital staff about Tourette from the inside out.[16:01] Why nursing was the perfect fit—and how it supports her lifestyle.[18:26] CBT, reward systems, and tools that helped as a kid.[21:15] How adulthood has changed her relationship with tics and OCD.[22:13] Emily breaks down ABA therapy and how it connects to her own experience.[25:54] Practical parenting tips: more time in the morning, identifying triggers.[26:40] Communication tips for loved ones when it comes to pointing out tics.[28:06] Why meditation and yoga didn’t help—but massages did.[29:34] Talking openly with kids about their diagnosis.[31:27] Emily’s advice for those newly diagnosed with TS.  Links & Resources:Emily’s children’s book: Emily’s Tic – Available on AmazonRemember, 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. Send us a Text Message.Support the Show.Send us Fan MailSupport the show

What does it mean to be truly free in our creativity? How do obstacles—both personal and societal—shape the way we express ourselves? In this episode, I sit down with Sara Henya, a Philadelphia-based composer, singer, harpist, guitarist, pianist, and music teacher, to explore these questions and more. Sara shares her journey as an artist, her deep connection to the Tourette Syndrome (TS) community, and her reflections on neurodiversity, resilience, and self-acceptance.We dive into her experiences at the New Jersey Center for Tourette Syndrome’s events, the impact of music therapy, and the role of executive function in creative pursuits. Plus, we discuss the obstacles to creative freedom—both in general and specifically within the TS community—and how Sara has navigated them.  Episode Highlights:[00:22] Introduction – Welcoming Sara Henya and diving into her background as a multi-talented musician and composer.[2:40] The Power of Community – How Sara and I met through the NJCTS and our work with the Tim Howard Leadership Academy.[7:32] Songwriting for Change – The process of writing an Academy song with students and the joy of collaborative creativity.[9:21] Tourette’s and Creativity – How TS forces innovation and adaptability, shaping the artistic process in unexpected ways.[14:03] Healing Through Music – Sara’s personal reflections on therapy, trauma, and using music as a tool for self-expression.[20:00] Breaking Up with a Therapist – The importance of self-advocacy and knowing when to walk away from unhelpful therapy experiences.[27:43] Neurodiversity Within TS – Understanding the vast range of experiences within the TS community and how it fosters resilience.[33:08] Coping Strategies for ‘Bad Tic Days’ – Practical tools and techniques Sara uses to navigate high-tic days.[44:47] Creative Freedom & Overcoming Blocks – How self-doubt and executive dysfunction can limit creativity, and strategies to push through.[46:01] Sara’s Upcoming Projects – A sneak peek into her Philadelphia Fringe Festival show and where to find her music and videos. Links & Resources:🌐 Sara Henya’s Website – www.sarahenya.com 📘 Facebook – www.facebook.com/sarahenyaharpistTim Howard Leadership Academy  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. Send us a Text Message.Support the Show.Send us Fan MailSupport the show

What does it take to overcome barriers and achieve your dreams? In this episode of The Uptick, I sit down with Jenna Smith, a senior at Duke University and a newly awarded Rhodes Scholar, to talk about her journey navigating Tourette Syndrome while excelling academically and pursuing a career in law and criminal justice. From her early struggles with tics in the classroom to standing on some of the world’s biggest academic stages, Jenna shares how she built confidence, found community, and learned to embrace her unique path.Jenna Smith is a senior at Duke University originally from Scotch Plains, New Jersey. She will be graduating this May with a major in International Comparative Studies and a minor in journalism and media. Jenna was among the 32 recipients selected for the Rhodes Scholarship, where she will be going to the University of Oxford in the UK for 2 years of study Episode Highlights:[2:38] The moment Jenna found out she was awarded the Rhodes Scholarship.[4:59] How a documentary project in Mississippi shaped her passion for criminal justice.[7:06] Her dream of using restorative justice to create meaningful change.[9:23] Struggling with math, tic attacks during exams, and the pressure of academic performance.[13:47] The challenge of navigating Tourette’s in middle school and how self-awareness helped.[17:44] Learning to self-advocate—why early diagnosis and accommodations made a difference.[23:04] How humor and openness helped Jenna shape how others respond to her tics.[28:01] Growing up with a sibling who also has Tourette’s—lessons in support and resilience.[32:30] Taking on challenges: How Brazilian Jiu Jitsu became a confidence-building hobby.[37:05] Building confidence from within—why competence, community, and self-trust matter. Links & Resources:Duke UniversityPress Release about Jenna Smith: https://today.duke.edu/2024/11/duke-senior-jenna-smith-wins-rhodes-scholarshipThe Rhodes Scholarship: https://www.rhodeshouse.ox.ac.uk/ Restorative Justice Durham: www.restorativejusticedurham.orgDuke Justice Project: www.duke.eduRemember, 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.Send us a Text Message.Support the Show.Send us Fan MailSupport the show

Ever wondered what it’s like to be part of a life-changing leadership program designed specifically for teens with Tourette Syndrome? In this episode, I sit down with Melissa Fowler, director of the Tim Howard Leadership Academy, to explore how this immersive four-day experience at Rutgers University helps young adults develop self-advocacy, resilience, and leadership skills. We dive into the evolution of the program, the powerful mentorship provided by coaches, and the deep sense of community that makes this academy so unique.If you or someone you know is a teen with Tourette Syndrome looking for a supportive and empowering experience, this is an episode you don’t want to miss. Melissa also shares insights on what to expect at this year’s academy, the application process, and why this free program is truly a game-changer. Episode Highlights:[00:38] What the Tim Howard Leadership Academy is all about and why it’s such a big part of the NJCTS community.[02:52] The Academy’s Origin Story – How the program started in 2014 and how it’s evolved to better serve participants.[08:52] Team Talk & Mentorship – The unique peer-led discussions that foster deep connections and support among participants.[12:33] Why Coaches Love It Too – How the Academy benefits not just the teens, but the young adult mentors who return year after year.[17:18] Living on Campus at Rutgers – What it’s like staying in dorms, eating in the dining hall, and getting a taste of college life.[21:39] How to Apply – Breaking down the simple, stress-free application process for both participants and coaches.[27:05] A Thoughtfully Designed Program – The mix of expert-led discussions, advocacy training, and real-world scenarios to help teens navigate life with Tourette’s.[33:28] Recreation & Community Building – From quiet spaces to outdoor sports, the Academy ensures there’s something for everyone.[40:31] A Global, Free Program – Teens from around the world can apply, and the Academy is free (excluding travel expenses).Information about Tim Howard Leadership Academy:📅 Application Deadline: February 15 (official), but applications are accepted through February 28, 2025.📅 2025 Academy Dates: July 31 – August 3, 2025 at Rutgers University.🔗 Learn More About the Academy: njcts.org/academy📝 Apply Here: njcts.org/academy/application📧 Contact Melissa Fowler (Academy Director) with Questions: [email protected] 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. Send us a Text Message.Support the Show.Send us Fan MailSupport the show

In this heartfelt and inspiring episode, I sit down with Wilamena Dyer to explore her journey living with Tourette Syndrome and OCD. We dive into the challenges, triumphs, and surprising lessons that come with embracing neurodiversity, self-acceptance, and resilience. Wilamena shares candid stories about her experiences with tics, coping strategies, and how music has become a transformative force in her life. We also discuss different therapies, creative outlets, and why finding what works for you is key to thriving with Tourette's. Join us as we talk about the power of advocacy, leaning into your unique strengths, and using creativity as a path to personal growth.Wilamena Dyer is an alum of the NJCTS Tim Howard Leadership Academy. She is currently a first year university student studying percussion in London.  Episode Highlights:[0:53] - Kicking things off: Introducing Wilamena and her journey with Tourette Syndrome.[3:04] - Wilamena's treatment toolbox: Medication, ERP, and the value of practical therapies.[7:16] - A closer look at Habit Reversal Training (HRT) and its challenges.[11:06] - How Wilamena’s tics evolved over the years and the resilience it built.[15:33] - Michael’s story of managing a painful tic with distraction and multitasking.[18:21] - Understanding "cousins" of Tourette's: Wilamena’s experience with OCD.[22:10] - The uphill climb of ERP therapy and how it changed Wilamena’s life.[24:05] - Wilamena’s future plans: Studying music therapy and spreading awareness.[27:52] - Advice for the newly diagnosed: Embrace your tics and live fully. Links & Resources:Wilamena's website: https://www.tictastic.com/ Wilamena's youtube channel: https://www.youtube.com/channel/UClILmxZbGU8nX8oxrCLGcOg 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. Send us a Text Message.Support the Show.Send us Fan MailSupport the show

Welcome back to The UpTic! As 2024 comes to a close, I’m reflecting on the incredible conversations we’ve had this year and the powerful insights shared by our guests. In this special highlights episode, we revisit some of the standout moments from the season, featuring discussions on occupational therapy, neurodiversity advocacy, groundbreaking research, and more.Dive into inspiring stories, actionable advice, and cutting-edge research that not only demystify TS but also shine a light on the strength and resilience of the TS community. Press play and hear from parents, researchers, advocates, and professionals who’ve shared their experiences and wisdom with us throughout the year. Episode Highlights:[0:00] – Opening Reflections: Reflecting on the mission of the podcast and the unique diversity of Tourette Syndrome cases.[3:20] – Empowering Through Occupational Therapy: Practical life tools for TS management with Shannon Floyd and Jan Rowe.[4:59] – Empathy in Action: Nurse Jillian Firenze shares how laughter and support from her parents shaped her journey.[6:29] – Parenting with Positivity: Insights from Rena and Maggie LaSalle on minimizing stress and building a support system for children with TS.[9:37] – Advocating Unapologetically: Harvard freshman Slayton Cooper discusses the importance of owning your needs and advocating for them confidently.[12:00] – Breaking the Feedback Loop: Dr. Angie Landeros-Weisenberger explains the brain's sensory gating system and the science of habit reversal.[14:23] – Shaping the Home Environment: Drs. Jeremy and Jeff Lichtman, father and son psychologists who discuss what worked in their home environment.[19:30] – Do You Tick in Your Sleep?: Occupational therapist Ben Mooney explores the connection between sleep and overall well-being in TS management.[23:57] – Understanding TS Through Habits: Drs. Jay and Max Tischfield discuss the role of habit formation in TS and their cutting-edge research with Tourette mice.[31:15] – Holistic Approaches to Care: Drs. Lori Rockmore and Dr. Daniela Colognori emphasize the power of attitude and family support in shaping a child’s long-term outlook.[34:04] – Managing Public Perception: Dr. Robert Zambrano on navigating social situations and building resilience in individuals with TS.Links & Resources: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. Send us a Text Message.Support the Show.Send us Fan MailSupport the show

Joining me this week are two incredible guests from the NJCTS Community Connections program: Peyton Estabrook, a long-time participant, and Alina Lawas Osborn, the program coordinator. In this episode, we discuss how creating safe spaces for people with Tourette Syndrome can foster connection, reduce isolation, and empower individuals to thrive. From the challenges of starting new communities to the creative solutions that bring people together, this conversation is packed with insights for anyone looking to build or find a community of their own.  Episode Highlights:[0:29] - Introducing Peyton and Alina: leaders in community building at NJCTS.[2:20] - Alina shares how she came full circle from a Community Connections member to program coordinator.[5:18] - Peyton talks about overcoming self-consciousness and the value of finding a safe space.[8:14] - How connecting with others in marginalized groups fosters empowerment and strength.[11:18] - Zoom meetings versus in-person events: the strengths and limitations of each format.[13:11] - Strategies for building community in the digital age and the decline of “third spaces.”[19:04] - Ideas for improving virtual community events, including breakout groups and “fast friends” sessions.[27:11] - Finding hope and resilience through community and learning from others’ experiences.[30:29] - Alina’s advice for approaching new groups with curiosity and breaking patterns of isolation.[36:03] - Final reflections on building community as an ongoing, collaborative process. Links & Resources: Guests:Alina Lawas Osborn - Program Coordinator for NJCTSPeyton Estabrook - Community Connections memberThe next community connections is on December 16 at 7pm ET. Listeners can register here: https://njcts.org/event/community-connections-for-adults-with-ts-10/ 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.Send us a Text Message.Support the Show.Send us Fan MailSupport the show

In this episode, I sit down with Dr. Lori Rockmore and Dr. Daniela Colognori, two clinical psychologists with extensive experience treating individuals with Tourette syndrome (TS) and related conditions. Both have a rich history of working at the Rutgers TS Clinic, where they gained invaluable insights into providing holistic, family-focused care. Throughout our conversation, we discuss their personal journeys into the field, how their practice has evolved, and the incredible strengths they see in their patients.We discuss what it means to offer holistic treatment, going beyond the tics themselves to address broader issues like school performance, family dynamics, and other comorbid conditions such as OCD and anxiety. Dr. Rockmore and Dr. Colognori share stories of resilience, the importance of seeing the whole person, and how families play a crucial role in supporting individuals with TS.  Episode Highlights:[01:17] – Dr. Rockmore shares how her work in Tourette began, sparked by her collaboration with Dr. Kathy Budman.[03:57] – Dr. Colognori recounts how she was "randomly" placed in the Rutgers TS program and ended up working alongside Dr. Rockmore.[06:49] – Holistic care explained: Addressing the patient as a whole, including family, school challenges, and comorbidities like OCD and anxiety.[09:34] – Dr. Rockmore and Dr. Colognori discuss the strengths of children with TS, emphasizing their talents beyond their tics.[12:45] – Exploring the challenges and rewards of training students to treat TS, and how the Rutgers program equips them for treating complex conditions.[20:17] – Practical advice: Dr. Rockmore and Dr. Colognori outline how they prioritize interventions based on functional impairments and patient input.[24:20] – Advice to patients with Tourette’s: "Tics are just one part of who you are—pursue your passions and live your life to the fullest." Links & Resources: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.Send us a Text Message.Support the Show.Send us Fan MailSupport the show

Let’s get to work and discuss job searching and career building as a neurodivergent professional. Whether you're dealing with Tourette Syndrome, ADHD, or other conditions, this episode is packed with practical tips to help you navigate the often tricky job market. I’ll share advice on disclosing your condition during interviews, the importance of requesting accommodations, and how to frame your neurodivergence as a strength. Plus, I’ll break down some tools and strategies to help you manage the job search process and give you an edge when applying for positions in today’s competitive market.This conversation is for anyone looking to optimize their career approach—whether you're just starting out or you're already established but want to take your experience to the next level. We’re talking about everything from tackling applicant tracking systems (ATS) to turning your unique qualities into professional advantages. Join me as we explore how to land the right job and thrive in it![2:35] – The challenges of today's job market and how it's an employer’s market.[6:50] – Navigating disclosure: Should you disclose your condition in an interview?[12:18] – How to ask for accommodations at work and during the interview process.[16:40] – Tips on tailoring your resume for applicant tracking systems (ATS).[21:12] – Tools and resources for job seekers, including portfolio-building advice.[26:00] – Reminders about key resources and support for neurodivergent professionals.Links & Resources:Job Accommodation Network: https://askjan.org/ Job Scan: Gives feedback on your resume based on a job description: https://www.jobscan.co/ Huntr Chrome Extension: Also a smartphone app that helps save jobs: https://huntr.co/ Teal HQ: Website and smartphone app to keep track of job applications and interviews: https://www.tealhq.com/ Teal HQ Job Tracker Spreadsheet: https://www.tealhq.com/tools/job-tracker Neurodiversity Career Connector: Find inclusive and neurodivergent-friendly companies: https://ndcc.simplifyhire.com/ National Disability Rights Network: https://www.ndrn.org/ Leopold Talent: Career coaching and job search for neurodivergent professionals: https://www.leopoldtalent.com/ 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.Send us Fan MailSupport the show

In this episode, we’re excited to sit down with Hilary Kruchowy, the new Executive Director of the New Jersey Center for Tourette Syndrome (NJCTS). Hilary shares her journey, from her beginnings in art history to her transition into nonprofit leadership, culminating in her new role at NJCTS. We dive into Hilary’s vision for the organization, particularly how she plans to build on the legacies of past leaders while bringing her own fresh perspective to the table. We also discuss the incredible impact of NJCTS programs, including the Leadership Academy and the Rutgers partnership, as well as some exciting upcoming events like the 20th Anniversary Gala and the Parent-Teen Summit. Whether you’re part of the TS community or just curious about the work being done, this conversation is a great way to get to know NJCTS and its future under Hilary’s leadership. Episode Highlights:[0:00] - A special announcement about the NJCTS 20th Anniversary Gala.[2:11] - Hilary Kruchowy discusses her background in nonprofit work and how it prepared her for her new role.[3:58] - Reflecting on the legacies of past leaders, Faith and Pat, and how Hilary plans to honor their work.[7:50] - Hilary shares her vision for the future of NJCTS, including expanding programs to serve more of the TS community.[10:00] - The global impact of NJCTS programs and the challenges of state-level funding.[13:12] - The importance of educating pediatricians and neurologists about Tourette Syndrome.[16:24] - Exciting new initiatives like the Parent-Teen Summit and how they foster connections within the TS community.[22:56] - A deep dive into NJCTS’s advocacy work at the state level and the critical role it plays in securing funding.[26:46] - How listeners can get involved with NJCTS, from volunteering to joining the mailing list. Links & Resources: NJCTS 20th Anniversary Gala: https://njcts.org/20thanniversarygala/ 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.Send us a Text Message.Support the Show.Send us Fan MailSupport the show

In this episode of The UpTick, I chat with Dr. Robert Zambrano, a clinical psychologist and cognitive behavioral therapist specializing in Tourette Syndrome (TS), Obsessive-Compulsive Disorder (OCD), and anxiety disorders. Dr. Zambrano shares his journey from an OCD-focused practice to becoming a key figure in the treatment of Tourette's, discussing the overlap between TS and OCD and the unique therapeutic approaches he uses. Dr. Zambrano is a certified expert in Cognitive Behavioral Therapy, particularly in Exposure and Response Prevention (ERP) for OCD, and has been working with patients since 2000. He is also involved with the NJCTS Tim Howard Leadership Academy and specializes in treating persistent tic disorders and body-focused repetitive behaviors (BFRBs). His practice, Stress and Anxiety Services of New Jersey, offers specialized telehealth services for anxiety disorders. Episode Highlights:[1:25] - Dr. Zambrano shares how he unexpectedly entered the field of Tourette Syndrome through his work with OCD.[6:14] - Discussing the overlap between Tourette Syndrome and OCD and the percentage of people with TS who also have OCD.[10:23] - Delving into "tourettic OCD" and how it differs from standard OCD, with real-world examples from Dr. Zambrano's practice.[14:50] - The importance of practicing therapy techniques like Habit Reversal Training (HRT) at home and integrating them into daily life.[18:07] - Addressing anxiety in people with Tourette’s and how it can exacerbate tics.[27:30] - Understanding cognitive therapy and the power of recognizing that we don't have to act on every thought our brain produces.[39:22] - How to respond when others don't react kindly to tics and the importance of finding your tribe. Links & Resources:Dr. Robert Zambrano’s Website: http://www.stressandanxiety.com 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. Send us a Text Message.Support the Show.Send us Fan MailSupport the show

In this episode, I have a heartfelt conversation with siblings Anna and Eric Baldwin, both of whom grew up with Tourette Syndrome (TS). Anna, a middle school math teacher, and Eric, a senior at Franklin and Marshall College, share their unique experiences of living with TS in a family where it was openly discussed and supported. We explore the dynamics of their childhood, the challenges and triumphs they faced, and how their shared experiences have shaped their lives today. Join us as we discuss the importance of support systems, the impact of early diagnosis, and the ways they’ve learned to advocate for themselves and others.Discover the Baldwin siblings' journey from their early diagnosis to their roles as advocates and educators. The Baldwins provide insights on coping mechanisms, the significance of accommodations in school, self-acceptance, and advice for young people and families navigating life with TS. This conversation offers a candid look at the realities and resilience of living with TS. Episode Highlights:[02:15] The dynamics of growing up with siblings who also have TS.[06:31] Early diagnosis and family support.[10:22] Coping with tics at home and school.[13:27] The role of advocacy and community involvement.[19:38] Changes in awareness and understanding of TS over the years.[21:29] Navigating college life with Tourette Syndrome.[29:11] Importance of accommodations and early interventions.[36:16] Leveraging ADHD strengths in teaching.[37:03] Final advice for individuals and families affected by TS.  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. Send us a Text Message.Support the Show.Send us Fan MailSupport the show

In this episode, I sit down with Ray Nardella, the Assistant Director of Resident Life for Student Conduct at the University of Maryland. Ray shares his extensive experience with public policy, disability law, and grassroots organizing, all while adding a touch of humor and warmth to our conversation. We discuss securing accommodations for individuals with Tourette's syndrome and other disabilities in various settings, from education to the workplace. Whether you're preparing for exams or navigating job accommodations, Ray offers practical advice and valuable insights to help you advocate for your needs effectively.We also explore the broader implications of disability rights, discussing everything from legal protections to practical tips for everyday life. Ray’s passion for empowering individuals shines through as he provides a comprehensive guide to understanding and utilizing accommodations. This episode is a must-listen for anyone looking to better understand their rights and the resources available to support them. Episode Highlights:[1:31] Discussing Accommodations: From High School to Graduate School[5:38] How to Get Accommodations for Graduate School Exams[10:03] The Importance of Detailed Documentation[12:45] Navigating Workplace Accommodations[17:11] Legal Rights and Disclosure in the Workplace[20:23] Practical Tips for Talking to Supervisors[23:33] Accommodations Beyond Education and Employment[27:50] Understanding Disability Rights in Different Sectors[30:04] Legal Clinics and Pro Bono Work for Disability Rights[32:08] Ray’s Personal Insights on Parenting and Tourette Syndrome[35:23] Reflecting on Childhood and Advocacy  Links & Resources:Job Accommodation Network: https://askjan.org/  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. Send us a Text Message.Support the Show.Send us Fan MailSupport the show

In this episode, I'm joined by the brilliant Drs. Jay and Max Tischfield, father and son renowned Tourette researchers at Rutgers University. They share their fascinating journey into the world of Tourette Syndrome research, discussing how they use genetic data to create groundbreaking mouse models that mimic the human condition. We delve into the intricacies of gene mutations, the challenges of studying tics in mice, and the potential for these models to lead to effective treatments.You'll hear about the Tischfields' unique father-son dynamic in the lab, their collaborative work with the NJCTS Sharing Repository, and the exciting prospects of using AI and advanced genetic editing to further understand and treat Tourette Syndrome. This episode offers a peek into the cutting-edge science that's pushing the boundaries of what we know about TS. Episode Highlights:[02:06] Jay's unexpected journey into TS research, sparked by a passionate advocate.[05:35] Max's fascination with using gene editing to create Tourette-like mouse models.[07:58] The promise of using these models to test potential treatments.[13:23] Exploring the complexities of identifying tics in mice.[16:49] How human studies guide mouse model research and the role of sensory motor gating.[24:42] Discussing the genetic landscape of Tourette Syndrome.[28:30] The future of drug testing on TS mouse models.[37:11] Cognitive Behavioral Intervention Therapy (CBIT) and its role in treating tics.[43:02] How listeners can contribute to the NJCTS Sharing Repository.  Links & Resources:New Jersey Center for Tourette Syndrome: https://njcts.org/ Dr. Max Tischfield’s Website: http://www.maxtischfieldlab.org/  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. Send us a Text Message.Support the Show. Send us Fan MailSupport the show

In this episode, I had the pleasure of speaking with Ben Mooney, an Occupational Therapist based in Colorado, specializing in insomnia. He has Tourette syndrome and is a certified CBIT practitioner.We uncover how brain imaging has shed light on the nocturnal activities of our brains, particularly for those with tic disorders. Ben shares practical insights on the importance of consistent wake-up times, the impact of stress on tics, and the role of sleep in our overall health. Whether you're dealing with sleep issues or simply curious about the mysteries of sleep, this episode is packed with valuable information and tips to help you achieve better rest and manage your tics more effectively. Episode Highlights:[01:27] - Do people with Tourette syndrome tic in their sleep? Ben explains the science.[03:35] - Differences in tic frequency during REM and deep sleep stages.[10:54] - The role of circadian rhythms in sleep and how it affects people with Tourette syndrome.[14:20] - Impact of technology and blue light on sleep patterns.[17:02] - Balancing societal demands with the need for proper sleep.[25:53] - The effects of caffeine on sleep and best practices for consumption.[30:32] - Resources and advice for finding sleep specialists and improving sleep habits.[33:31] - The importance of consistent wake-up times and tips for better sleep.  Links & Resources:·         CBT-i Coach: a free app to help track and improve sleep patterns: https://mobile.va.gov/app/cbt-i-coach ·         Ben Mooney’s Website: https://mooneywellness.com/  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. Send us a Text Message.Support the Show. Send us Fan MailSupport the show

In this inspiring episode, I sit down with Dr. Jeff Lichtman and his son, Jeremy Lichtman, PsyD, for an intimate conversation about parenting a child with Tourette syndrome. Jeff, a renowned psychologist and visionary leader in special education, shares his personal journey of coming to terms with Jeremy's diagnosis and the challenges they faced as a family. Jeremy, now a successful psychologist himself, reflects on growing up with Tourette's and how his parents' unwavering support and advocacy shaped his life. Together, they offer invaluable insights and advice for parents navigating the ups and downs of raising a child with special needs.Dr. Jeff Lichtman, Director of Student Mental Health Services and Professor at Touro University, is known for his 30 years of visionary leadership at Yachad, the National Jewish Council for Disabilities, and founding the IVDU Schools. As a psychologist, his expertise includes counseling, leadership, social skills development, and teacher training.Jeremy Lichtman, PsyD, licensed psychologist and director at Central Therapy, specializes in treating youth and adults with emotional dysregulation, PTSD, Tourette syndrome, anxiety disorders, OCD, and trichotillomania. Certified in CBIT and MDMA-assisted therapy for PTSD, he provides individual counseling, facilitates groups, and presents workshops for NJCTS. Episode Highlights:[2:24] Jeremy's earliest memories of his tics and getting diagnosed with Tourette's.[6:32] Jeff's perspective as a father seeing his son going through this in middle and high school.[10:25] The challenges Jeremy faced in school due to his ADHD and hyperactivity.[15:21] How Jeremy used humor as a powerful tool to educate people about his Tourette's.[19:16] The shift in focus from social concerns to academic performance in high school.[24:35] Balancing the needs of siblings when one child requires more specialized support.[33:44] Jeremy's adult support group for parents of children with Tourette's through NJCTS.[37:03] Jeremy's appreciation for his parents' support and the importance of utilizing available resources.[38:46] Jeff's closing advice for parents: have faith in your child's resilience. Links & Resources:Jeremy's website - https://www.centraltherapynj.com/Jeremy's NJCTS parent support group: https://njcts.org/event/todays-challenge-tomorrows-strength-a-support-group-for-parents-of-children-with-tourette-or-tic-disorders-2/?event_date=2024-06-12 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.Send us a Text Message.Support the Show.Send us Fan MailSupport the show

On this insightful episode, I sit down with author Michele Turk to discuss her newly released memoir "What Makes Him Tic? A Memoir of Parenting a Child with Tourette Syndrome." As both a journalist and mom, Michele shares her candid journey navigating the unpredictable waters of raising a child with Tourette's - the challenges, misconceptions, hard-won wisdom, and unexpected gifts. Her story offers an authentic, relatable perspective that will deeply resonate with any parent or loved one supporting someone with Tourette's or other neurodivergent conditions. Michele Turk has worked as a journalist for three decades, covering parenting, health, and education. Her articles and essays have appeared in Bloomberg Businessweek, Parents, Parenting, the Hartford Courant, Elle, USA Weekend, The Washington Post, Brain, Child, and Next Avenue. She has served as president of the Connecticut Press Club since 2015. Turk grew up in Southern New Jersey and currently lives in Connecticut. Michele’s new book “What Makes Him Tic? A Memoir of Parenting a Child with Tourette Syndrome” will be released on June 4.Episode Highlights:[1:29] - Michele's son Michael's shocking Tourette's diagnosis at 11 inspires her memoir.[3:04] - Unpacking media's harmful Tourette's stereotypes around coprolalia.[5:44] - Michael's passion for music boosted self-esteem, managed tics.[9:50] - Michael's hidden perfect pitch revealed through musical focus![11:45] - The overlooked strengths and superpowers of neurodivergence.[13:30] - Hard lessons on compassionately intervening in bullying.[18:21] - Michele owns missteps like self-criticism, husband frustrations.[22:53] - Wise strategies for united parenting: couple time, therapy.[29:13] - Using online communities and orgs as careful informational lifelines.[33:45] - The paramount need for self-forgiveness in this arduous journey. Links & Resources:Connect with Michele: https://www.micheleturk.com/ 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. Send us a Text Message.Support the Show.Send us Fan MailSupport the show

If you're looking to be inspired, you're in for a treat with today's episode of our podcast. I had the privilege of speaking with Daniel Ferron, an extraordinary individual whose journey with Tourette Syndrome is nothing short of incredible. Daniel has navigated life's highs and lows with a condition that was scarcely understood when he was diagnosed in the 1970s. His story is a testament to the power of perseverance and the importance of support. Daniel Ferron is an entertainer, actor, and filmmaker. Episode Highlights:[01:20] - Daniel Ferron’s diagnosis in the 1970s by Tourette pioneer Dr. Arthur K. Shapiro.[04:06] - Early treatment and studying with Daniel’s documentary.[06:13] - Removed all treatment in his adolescence and had 10 years of tic remission.[07:30] - Embracing Tourette Syndrome with humor.[08:27] - When the tics returned.[10:04] - Daniel’s experience with school in New Jersey.[11:09] - Family support was paramount to his success.[13:27] - Finding his calling in entertainment.[15:45] - The advancement of Tourette advocacy leading to understanding.[17:30] - Going to the movies and getting into the entertainment business.[20:05] - Daniel’s documentary “My Life, My Story, My Tourette’s”.[23:40] - Advice for the younger Tourette community.[27:03] - Advice to disconnect.[28:50] - Clarity and sense of self naturally improves as you age.Links & Resources:Daniel Ferron's Documentary: "My Life, My Story, My Tourette's"New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/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 Daniel's story resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.Send us Fan MailSupport the show

In this episode, I had a compelling conversation with Dr. Angie Landeros-Weisenberger, an Associate Research Scientist at the Yale Child Study Center. We discuss the current state of research and the latest breakthroughs in treating tics and co-occurring conditions such as OCD and depression. Dr. Angie's expertise and passion for research left me both inspired and hopeful for what's on the horizon in patient care.Episode Highlights:[01:30] - Dr. Angie’s history of research.[02:39] - Innovative treatments on the horizon.[06:10] - Exploring genetic mysteries of tics.[09:37] - Breaking the habit loop.[13:33] - The future of wearables.[16:18] - Trichotillomania research and why it’s not a tic disorder.[18:48] - Gender bias in tic diagnosis.[20:46] - A lifetime with OCD and tics.[24:33] - Selective serotonin reuptake inhibitors (SSRIs) treatment for OCD.[27:09] - Science is not set in stone, changes will occur with more research.[27:25] - Advances in research of tools, such as ketamine, for treatment-resistant depression.[31:34] - Very promising things are coming through research and studies.Links & Resources:Yale Child Study Center: https://medicine.yale.edu/childstudy/  New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/I want to remind all our listeners that each episode we share is a stepping stone to better understanding the intricate world of Tourette Syndrome and related disorders. If you've enjoyed today's episode, rate us and leave a review. Your feedback not only supports the show but also helps us reach and educate more people like you.Send us Fan MailSupport the show

Today I am joined by Slayton Cooper, a high school senior valedictorian and youth ambassador for the Tourette Association of America. Slayton is a passionate advocate for Tourette Syndrome, neurodiversity, and related conditions. We explore what it means to truly embrace our unique neural landscapes in school and at work. We explore the positives and negatives of labels, the importance of advocating for your needs, and finding your most authentic self. Slayton offers profound wisdom well beyond his years on self-acceptance, resisting judgments, and seeing the beauty in our differences. His message of empowerment for those with Tourette Syndrome and similar conditions is truly uplifting.From personal struggles to triumphant advocacy, this conversation unveils the importance of understanding, acceptance, and empowerment within the neurodiverse community and beyond. Don't miss this insightful journey into the heart of neurodiversity.Timeline Highlights:[01:20] What does neurodiversity mean?[04:29] Advocating for inclusion.[07:39] Challenges in employment.[11:30] Stigmas in the workplace.[16:43] Navigating standardized tests.[20:23] Balancing goals and ambitions with neurodiversity.[23:00] Tools and resources[31:54] Suppressing tics.Links & Resources:New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ Thank you for tuning into this enlightening conversation on neurodiversity. If you've found resonance or inspiration in our discussion, I encourage you to rate, follow, share, and review our podcast. Your support helps us bring more stories like this to light, empowering others to embrace their unique selves fully.This episode is dedicated to and in memory of, Patricia Phillips. Rest in peace, Pat. May your memory be a blessing, always.Send us Fan MailSupport the show

In this episode, I share a deeply personal journey that hits close to home for many of us navigating the complexities of parenting a child with Tourette Syndrome (TS). Alongside the insightful Rena and Maggie LaSalle, we delve into the world of occupational therapy (OT), Cognitive Behavioral Therapy (CBT), and the power of emotional intelligence. Our discussion centers on their son, Liam, and the innovative strategies they've embraced to support his growth and well-being. This episode is a beacon of hope and a toolkit of strategies for parents facing similar challenges, underlining the importance of understanding, patience, and continuous learning in the face of TS.Timeline Highlights:[01:47] Exploring Liam's occupational therapy journey.[03:22] How cognitive behavioral therapy aids Liam.[05:02] Focusing on Liam's emotional growth.[09:42] The importance of emotional intelligence in children.[11:28] Strategies for navigating stress and challenges.[15:59] Finding what works best for Liam through trial and error.[18:07] Adjusting routines for Liam's needs.[21:01] Creating a supportive environment for Liam.[26:49] Liam's transition to a supportive educational setting.[30:07] Seeking the best medical and therapeutic advice.[33:58] Lessons and advice from Liam's journey.Links & Resources:•New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ If you found this look at occupational therapy for Tourette’s helpful, don’t forget to subscribe, rate, and review! It really helps spread the word.Send us Fan MailSupport the show

We continue our fascinating deep dive into the winding history of Tourette Syndrome. Dr. Howard Kushner joins me again to discuss the early focus on coprolalia, psychoanalytic theories blaming patients, and the heroic efforts of advocates like the Shapiros to reframe TS as biological. We also touch on the importance of support groups, promising new interventions, and predictions for the future. Dr. Kushner guides us through the shifting perspectives on TS, from the bleak early views encapsulated by the phrase "once a ticker, always a ticker," through the era of psychoanalytic blame, to our current understanding of TS as a multifaceted neurodevelopmental condition. Drawing from his vast research and his 1999 seminal work, "A Cursing Brain? The Histories of Tourette Syndrome," we examine the complex journey of TS diagnosis, the stigma attached to symptoms such as coprolalia, and the importance of a supportive community and multidisciplinary care for those affected.Timeline Highlights:[01:16] The emphasis on coprolalia in early TS research.[02:51] Tic reduction when engrossed in an activity.[05:04] The Tourette Syndrome Association's advocacy.[07:12] The power of youth support groups for TS.[09:22] Reframing TS as biological - Shapiro's contributions.[11:42] Predictions for the next 50 years of TS research.[13:30] The risk of over-medicalizing TS identities.[14:23] Emerging interventions like TMS and medicinal marijuana.[15:40] Appreciating Dr. Kushner's historical research.[16:05] The link between left-handedness and TS.[17:22] Advice for living well with TS.[19:04] The importance of youth camps and support groups.Links & Resources:•A Cursing Brain: The Histories of Tourette Syndrome by Dr. Howard Kushner.•New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ If you found this look at the history of Tourette's helpful, don't forget to subscribe, rate, and review! It helps spread the word.Send us Fan MailSupport the show

In this episode, we embark on the first of a two-part series, diving into the history of Tourette Syndrome (TS) with Dr. Howard Kushner, a renowned expert in the history of neurology and medicine. We explore the evolution of TS from its earliest documentation, predating the 19th century, through the significant contributions of Georges Gilles de la Tourette, and its progression across medical and psychological models throughout the 20th century. Dr. Kushner guides us through the shifting perspectives on TS, from the bleak early views encapsulated by the phrase "once a ticker, always a ticker," through the era of psychoanalytic blame, to our current understanding of TS as a multifaceted neurodevelopmental condition. Drawing from his vast research and his 1999 seminal work, "A Cursing Brain? The Histories of Tourette Syndrome," we examine the complex journey of TS diagnosis, the stigma attached to symptoms such as coprolalia, and the importance of a supportive community and multidisciplinary care for those affected.Timeline Highlights:[02:00] How Dr. Kushner first became interested in researching Tourette's Syndrome.[5:10] Dr. Kushner's continued involvement in the TS community.[7:14] How the book on Tourette's Syndrome has held up over time.[13:41] Early psychoanalytic theories blaming patients and parents.[17:08] The early history of Tourette Syndrome in the 1800s.[20:03] The disturbing early anti-Semitism in TS research.[22:20] The focus on coprolalia in the early characterization of TS.[23:57] The notion that childhood sexual conflicts caused TS.[24:35] Tic reduction when engrossed in an activity - an early observation.[26:46] The Tourette Syndrome Association reframing TS as biological.[28:16] The importance of youth support groups for TS.[30:36] The heroic contributions of Shapiro in advocating for TS.[32:10] Early evidence that medications could treat TS.[33:09] Predictions for the next 50 years in TS research and treatment.[35:18] Emerging interventions like DBS brain stimulation for TS.[37:13] Advice for living well with TS.Links & Resources:•A Cursing Brain: The Histories of Tourette Syndrome by Dr. Howard Kushner.•New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ Stay tuned for part 2 of this interview on March 12 as we go further into the history of TS! If you found this look at the history of Tourette's helpful, don't forget to subscribe, rate, and review! It helps spread the word.Send us Fan MailSupport the show

In this episode, I speak with occupational therapists Shannon Floyd and Jan Rowe about their expertise helping both children and adults with Tourette Syndrome. We have an enlightening discussion around how occupational therapy can empower those with tics and Tourette's to live full, uninhibited lives.Shannon and Jan outline the evolution of using a more cognitive behavioral approach compared to traditional sensory techniques. We also explore the difference between organic and functional tics, managing sensory issues like clothing textures, and critical emotional regulation skills.If you or a loved one experiences challenges from TS that hinder engagement in meaningful occupations, this episode will expand your understanding of how OT can help.Starting in 2024, there will be an "OT Compact Agreement" where about 36 states are collaborating and people who live in those can find an OT who is part of the compact and work with them. This can help people in rural communities find therapists across state lines, who are knowledgeable in TS and CBITTimeline Highlights:[01:05] The shift from sensory strategies to CBT for treating tics.[03:01] Heightened internal awareness in TS patients.[04:03] Learning competing responses and emotional regulation young.[13:44] Clothing accommodations for sensory issues.[16:07] Distinguishing functional tics from organic TS.[18:55] High treatment success rate for functional tics.[22:48] Recognizing personal warning signs of frustration.[25:21] OT meets needs beyond talk therapy.[29:40] Allowing telehealth across state lines with license portability.[32:06] Finding a TS-experienced OT in your area.Links & Resources:•Tourette Association of America Therapist Directory: https://tourette.org/resources/find-a-doctor/ •Learn about OT Compact for telehealth: https://otcompact.org/about/ •New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ If you found this look at occupational therapy for Tourette’s helpful, don’t forget to subscribe, rate, and review! It really helps spread the word.Send us Fan MailSupport the show

In this episode, I interviewed another TS advocate, Jillian Firenze. Jillian has been a coach and a nurse at the annual NJCTS Tim Howard Leadership Academy. In this episode, we discuss her childhood growing up with TS (and having siblings who also have TS), her work as a nurse, what inspired / motivated her to become a nurse, what tic attacks are and how to handle them, and general insights on supporting youth with TS.Episode Highlights:[00:45] Finding her calling in nursing after caring for sick family members.[05:09] Supporting her younger brother who was also diagnosed with TS.[08:38] Struggling to accept tics until having a breakthrough at the Academy.[10:32] Describing intense tic attacks and compassionate ways to respond.[15:31] Finding moments of self-care while coaching high-demand roles.[19:38] The tricky balance between supporting and triggering someone's tics.[22:43] Battling recurrent depression alongside TS in adulthood.[25:08] Uplifting others to embrace their true selves and never give up hope.Links & Resources:New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others. Send us Fan MailSupport the show

In this episode, I have an illuminating discussion with Callum deQuevedo about his life-changing experience undergoing deep brain stimulation (DBS) surgery to treat his severe Tourette Syndrome (TS). Callum shares the incredible story of his journey to DBS, from exhausting medications and therapy options, to making the decision for surgery, going through the procedure and recovery, to the transformative impact it has had on reducing his tics and self-injurious behaviors. While not a cure, DBS has given Callum a new lease on life. This powerful testimony sheds light on an emerging treatment option that could help others find relief.Episode Highlights:[01:27] Callum emphasizes DBS is not a cure but has significantly reduced his tics.[02:37] Callum details the lengthy DBS candidacy process.[05:30] Mental health criteria for getting DBS.[07:06] The process of DBS surgery.[09:27] Remote monitoring of Callum's DBS device.[10:58] Follow-up surgeries required.[12:38] DBS reduced Callum’s motor tics by 70%.[14:15] How DBS has lessened the burden of TS.[15:30] DBS has saved money caused from severe tic episodes.[16:25] How Callum enjoys going to the movies.[18:10] Being triggered by each other’s tics.[19:30] DBS has improved Callum's hand tremors and handwriting.[20:23] Mental health benefits of DBS.[21:33] Limitations after DBS, including high-contact sports and metal detectors.[23:54] Callum’s future college and career plans.[25:04] Impressed by Callum's deep knowledge of tic blockers.[28:54] Finding a TS therapist.[30:00] Callum’s one piece of advice for people with TS.[31:40] Post-DBS, Callum needs less accommodation at school now. Links & Resources:New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others. Send us Fan MailSupport the show

I had an enlightening discussion with Mason, a fellow advocate in the Tourette's community, about the complex intersectionality between TS and other identities. We explored the stigma surrounding coprolalia, the financial barriers to Tourette’s advocacy, and the dangers of gatekeeping Tourette’s diagnoses. Our conversation shed light on the diversity within the TS experience. Episode Highlights:[02:22] Kicking people with coprolalia out of the Tourette's community.[04:16] The camp video that emphasized Tourette’s is not about swearing.[06:12] Navigating intersectional identities beyond just having Tourette’s.[07:39] The heavy financial burden of Tourette’s advocacy.[10:08] Unpaid labor expected in disability advocacy communities.[12:53] Respecting gender diversity at Tourette’s summer camps.[14:31] The problem with accusing people of “faking” their tics.[15:56] Tourette’s manifestations viewed differently across gender.[17:53] Pretty privilege when it comes to tics being seen as “cute”.[19:32] Who is really behind the Tourette’s police?[21:01] Supporting conflicting access needs in the TS community.[22:50] Barriers to medical transition for trans people with disabilities.[25:00] Mason’s experience when coprolalia tics first emerged.[31:32] The importance of visible TS role models across the spectrum. Links & Resources:New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptic' with others. Send us Fan MailSupport the show

Join me as we explore the diverse intersection of Tourette Syndrome, culture, and identity with Michael Chichioco, a Filipino American medical student with a powerful story. In this episode, Michael opens up about his life with Tourette's, shedding light on the unique cultural challenges and the journey to understanding and acceptance. Tune in for an enlightening conversation that delves into the heart of living with Tourette's in a multicultural setting.Episode Highlights:[01:11] - Meet Michael Chichioco and discover the pivotal role of culture in his Tourette Syndrome journey.[01:53] - Michael's personal battle with Tourette's – the early signs, diagnosis struggles, and cultural barriers.[04:20] - A deep dive into childhood memories, understanding Tourette's, and family dynamics in different cultures.[08:43] - Exploring the diverse reactions to Tourette Syndrome and the complexities within families.[14:29] - The challenge of support and advocacy in varied communities and the significance of cultural awareness.[17:35] - Discussing the urgent need for more diverse voices and perspectives in the Tourette community.[23:41] - The power of representation: How diverse role models can reshape Tourette advocacy.[28:07] - Uncovering the geographical and cultural diversity in the Tourette world – why understanding matters.[30:14] - Michael's heartfelt advice for those living with Tourette Syndrome: Embrace and trust yourself.Links & Resources:●       Tourette Association of America, Northern California & Hawaii Chapter: https://tourette.org/chapter/ca-no/ ●       New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The Uptick' with others. Send us Fan MailSupport the show

Join me as we unwrap the shared lives of Nicole and Ben Stark, both professionals navigating life with Tourette syndrome. In this heartfelt episode, we dive into the quirks and comforts of being in a relationship where both partners have Tourette. From amusing sugar packet fidgets to the support system they've built, get ready to be charmed and enlightened by their journey together.Episode Highlights:[00:36] - Welcome to 'The UpTic': Meet Nicole and Ben Stark, a couple defining what it means to live and love with Tourette.[01:19] - The perks and trials of marriage when both partners have Tourette's.[02:28] - The art of support: Ben and Nicole discuss how they help each other through the tough days.[05:10] - Navigating the spectrum of co-occurring conditions and the importance of understanding each other's body language.[07:51] - Managing work and vocal tics: the Stark's approach to focus and quiet spaces.[08:46] - Entering the dating world with Tourette's: Ben and Nicole share their heartfelt advice on love and acceptance.[10:34] - New parents to Anthony: the Starks talk about the joys and challenges of parenthood.[16:24] Tourette's, self-esteem, and bullying.[20:59] Tourette's, relationships, and self-discovery.Links & Resources:New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ Remember, your story is powerful, and sharing your experiences can be the guiding light for someone else's journey. If you enjoyed this episode, please rate, follow, and share 'The UpTic' with others. Send us Fan MailSupport the show

Today we dig into the world of Tourette Syndrome (TS) and its management through Comprehensive Behavioral Intervention for Tics (CBIT). Our guest, Dr. Jeremy Lichtman, a licensed psychologist specializing in Tourette patients, sheds light on the myths and truths surrounding TS. We explore the intricacies of CBIT, debunking common misconceptions, and understanding its role as a transformative tool rather than a cure. Whether you're directly affected by TS, a caregiver, or just curious, this episode offers valuable insights and hope for managing Tourette Syndrome.Key Moments:- [00:00] Dr. Lichtman discusses the common misconception of CBIT as a cure for TS.- [01:17] Dr. Lichtman simplifies CBIT as a 'tool, not cure' for TS.- [04:48] Deep dive into CBIT: the principles, components, and how it functions.- [10:38] Real-life examples and success stories in managing TS with CBIT.- [17:02] Understanding the unique challenges of vocal tics and adult patients in CBIT.- [24:06] The journey of a patient mastering CBIT and its long-term impact.- [30:14] Addressing misconceptions about CBIT and identifying ideal candidates.- [35:20] Differentiating between TS and its comorbidities for effective treatment.- [42:28] Dr. Lichtman reflects on the power of conversation and education in TS management.Links & Resources- New Jersey Center for Tourette Syndrome and Associated Disorders: https://njcts.org/ - Dr. Jeremy Lichtman's Practice Information: [Website Link]- Comprehensive Overview of CBIT: [Resource Link]Thank you for tuning into The UpTic. If you found this episode insightful, please consider rating, following, and sharing our podcast. Your support helps us reach and empower more individuals. Remember, you're not alone in your journey with TS. Let's continue to stretch the boundaries and live our best lives!Send us Fan MailSupport the show

In today's episode, I sit down with the incredible Aidy Smith to discuss our personal experiences with Tourette syndrome. From the challenges of getting diagnosed at a young age to confronting the stigmas we've encountered, we share our most personal stories and insights. Listen in as we unravel the complexities of living with Tourette and explore why some of us even view it as a superpower.Links & Resources:- NJCTS: https://njcts.org/ If this episode resonated with you, I'd be grateful if you could rate, follow, and share it. Your feedback means the world to me, so please leave a review. Together, let's foster understanding and compassion in our community.Send us Fan MailSupport the show

Welcome to the series premiere of The UpTic! Today we’ll dive deep into life with Tourette Sydrome. From the challenges and the stigmas to the unique advantages it can bring to your life. Trust me, whether you're dealing with Tourette's or know someone who is, you won't want to miss this one. We're also getting into the power of advocacy and why it's crucial to open up about co-occurring conditions like ADHD. Strap in; it's going to be a meaningful ride!Key Moments:[0:00] Kick-off: Setting the Stage for an Eye-Opening Journey  [4:13] Unveiling the Mask: The Reality of Tourette's  [9:33] Amplifying Voices: The Power of Tourette's Advocacy  [15:19] Double-Edged Sword: Tourette's Meets ADHD  [20:04] Breaking the Silence: Advocacy Unplugged  [25:16] Celebrating Neurodiversity: The Final Frontier of AdvocacyLinks & Resources:- NJCTS: https://njcts.org/ If you enjoyed this episode, follow the podcast, share it with your friends, and drop a review. It means the world to me, and it helps other people find the show. Until next time, keep being unapologetically you!Send us Fan MailSupport the show

Welcome to 'The UpTic' a podcast that dives deep into the world of Tourette syndrome (TS). Just like an iceberg, most see only the tics of TS, but there's so much more beneath the surface. From the unique talents and challenges of those with TS to the diverse experiences within our community, we explore it all. Whether you have TS, advocate for the community, or are simply curious, this is your window into our world. Our episodes are filled with compelling interviews, expert insights, personal stories, and the latest advancements in TS research. We go beyond just TS, sharing stories from the LGBTQ+ community, various ethnic and cultural groups, and adults living with TS. But, 'The UpTic isn't just about education – it's about inspiring action, breaking down stereotypes, and building a world where everyone can tick freely. Join us in this movement to change the narrative around Tourette syndrome and neurodiversity. Follow or subscribe now, and together, let's make a difference!Brought to you by:  NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) Send us Fan MailSupport the show