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.

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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 NJCTS
• Peyton Estabrook - Community Connections member

The 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.

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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.

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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.

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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.

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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.

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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.

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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.

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Support the Show.

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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.

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Support the Show.

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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.

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