The UpTic

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.

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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.

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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.

Send us a Text Message.

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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.

Support the Show.

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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.

Send us a Text Message.

Support the Show.

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