How we made this digital hub

Tobias is a senior researcher, whose work aims to understand why Obsessive Compulsive Disorder (OCD) mostly emerges during adolescence, and to better understand what is happening in the brain during the condition. He investigates how brain networks develop during adolescence, how they impact behaviour, and how atypical development may lead to OCD.

Joanne is an engagement specialist, with experience in managing programmes, projects and events and creating high quality public resources. Her focus is to develop and deliver meaningful engagement practice, and communicate research in accessible and engaging ways. She currently supports over 120 researchers and clinicians, and specialises in providing support and building agency within both the researchers and the public and patient groups that she works with.

Tricia is a cognitive neuroscientist, whose research resolves around understanding brain mechanisms in mental health, particularly uncovering mechanisms underlying OCD and its psychotherapy towards predicting and improving treatment outcomes for the individual.

Alisa is a researcher working in the field of computational neuroscience and psychiatry. Her current research involves utilising intracranial recordings, a novel direct way to measure brain activity, to examine neurocomputational mechanisms of learning and decision-making. She completed her PhD research at the UCL and at Yale University's OCD Research Clinic. Her focus was on investigating the neurocomputational mechanisms underlying learning and decision-making alterations in people with OCD.

Karen is a researcher coordinating studies in OCD to understand and improve treatment outcomes. She is also currently a PhD student at QMUL investigating individual differences in emotion perception and its relationship to mental health.

Leigh has nearly 20 years’ experience in the voluntary and statutory sectors. She has held a number of senior leadership roles in national mental health charities and is proud to lead OCD Action’s team of staff and volunteers. She is passionate about increasing awareness of OCD as she believes there is a long way to travel before OCD is properly understood and everyone impacted by OCD has access to the right treatment at the right time.

As well as managing communications, campaigns and engagement work, Cara leads OCD Action’s Youth Service, including an e-Helpline support service for 14–25-year-olds struggling with OCD and related conditions. Cara is passionate about shifting the public perception of OCD and challenging misconceptions, believing that this is key to ensuring that everybody gets the treatment and support they need, when they need it.

Stephanie develops new programs for the entire IOCDF community, maintains the quality of IOCDF’s current programming, and oversees all educational content on the charity’s various websites and print materials. Stephanie has worked for the IOCDF since 2013 and is passionate about public mental health. She has a Masters of Public Health (MPH) and a Masters of Social Work (MSW), and is a member of the American Public Health Association’s Mental Health and Public Health Social Work sections.

Liz is the primary liaison between the IOCDF and the OCD community, including strategic and global partners, affiliates, special interest groups and advocate volunteers. Working closely with all departments, she oversees strategy, growth, and expansion of the IOCDF through these channels and focuses on increasing awareness and resources for those suffering from OCD and their families. As a parent of someone with OCD, she brings her personal passion of helping others, especially children, to the role.

Boris is responsible for the IOCDF Research Grant Program and other research-related projects, including writing and editing content for the OCD Newsletter. He has a Master of Arts (MA) in Clinical Psychology, and has been involved in research for a variety of psychology laboratories and projects over the past six years.

Rachel is an award-winning writer and creative facilitator, with twenty years of experience delivering workshops. She is the author of two poetry collections and a non-fiction book on literary letters. Her poems and stories have been widely published and she has won many awards, including The London Magazine Short Story Prize and the Writers & Artists Short Story Competition. Rachel is passionate about the power of creative writing and storytelling, particularly in relation to health, and she has worked as a creative facilitator on several large projects, using creative methods to share stories and explore health conditions and treatments.

Joana supports the Public Engagement team in their engagement initiatives. After a PhD in cognitive neuroimaging and several years of research, Joana decided to explore research through another lens by contributing to public engagement with research activities. She hopes to thereby help narrowing the gap that exists between research and society.

During the first two phases of the project, Sian was the Communications and Engagement Officer at UCL. Sian supported the Public Engagement team with their many engagement initiatives, as well as being responsible for managing the Department’s website and social media channels.

During the first phase of the project, Cassie was the Public Engagement Manager at the Wellcome Centre for Human Neuroimaging at UCL. With over ten years’ experience in public engagement in research, she oversaw a broad programme of engagement initiatives focused on embedding public engagement into the research process. The Centreʼs engagement programme aims to empower people with neurological and psychiatric disorders to contribute to and influence neurological research and rehabilitation.

Uma is currently earning her PhD in Neuroscience at the University of Wisconsin-Madison, researching the translational neurobiology of OCD and psychedelics. Her neurobiology research and global MHPS practice are both informed by her lived experience with lifelong OCD, comorbid PTSD, young-adult cancer, and other chronic illnesses. Uma is committed to bridging the gap between access to research and the lived experience community - especially for historically excluded groups. Her survivorship serves as the bedrock of her advocacy, carried out through her work as an educator, science communicator, organizer, and host of the podcast ‘A Chat with Uma.’ Uma is also an IOCDF Advocate and serves on the Board of Directors of OCD Wisconsin.

Alys is an Assistant Psychologist in the National and Specialist team in the OCD, BDD and Related Disorders Clinic at the Maudsley Hospital, UK.

Shaun is a powerful voice in OCD advocacy, was diagnosed with OCD at 27, igniting his mission to raise awareness of OCD and break barriers to treatment, particularly within ethnic minority communities. Shaun’s journey from ‘survivor to thriver’ with OCD has been featured on BBC Sounds, Metro, and Channel 4, where he fearlessly discusses his mental health journey. Passionate about progressive change, he’s an inspiring advocate and a member of OCD Action’s Diversity, Equity, and Inclusion Co-production Panel for People of Colour.

Monica is a Clinical Psychologist who was working in the National and Specialist team in the OCD, BDD and Related Disorders Clinic at the Maudsley Hospital, UK at the time this toolkit was produced.

Kyle is a current senior at Yale University studying neuroscience. Since recovering from OCD himself in middle school, Kyle has been heavily involved in OCD advocacy work with the International OCD Foundation. Currently, Kyle co-leads the Young Adult Special Interest Group at the IOCDF, co-Hosts the monthly Research Roundtable livestream, and sits on a number of planning committees. Aside from working with the IOCDF, Kyle has been a vocal mental health advocate both with UNICEF USA and the Early Childhood Peace Consortium.

Kathy is a former nonprofit COO/volunteer teacher for the US Peace Corps in Samoa/attorney and mother of two adult children, one of whom lives with obsessive compulsive disorder (OCD). She dedicates much of her time to volunteer work, including helping to form and facilitating support groups worldwide for hundreds of parents of adult children with OCD.

Maya is a post-baccalaureate clinical study coordinator studying obsessive-compulsive and related disorders at the University of North Carolina at Chapel Hill. Having lived with obsessive-compulsive disorder (OCD) since she was 14 year old, she is now a proud advocate for individuals who live with the disorder. As both a researcher and advocate, Maya is passionate about accessible research dissemination to those who need it most.

Zachary is an OCD Action Youth Engagement Panellist and a lived experience advocate hailing from Cardiff. He spearheads the award-winning platform ‘@ocdestigmatize’ and serves as a volunteer for OCD Action’s engagement panel. Zachary’s fervent commitment lies in eradicating stigma, driven by his determination to prevent the recurrence of his challenging encounters in accessing treatment.

Kim Vincenty is a mother, wife, OCD advocate, speaker, and support group facilitator who has spent the past 10 years fostering community and helping families find the best resources for mental health education, intervention and recovery. She most recently served as the president for OCD Jacksonville, an affiliate of the International OCD Foundation (IOCDF). Kim is currently an IOCDF Advocate. Known for sharing her relatable story, Kim has articles published in TODAY, Motherly, The Mighty, and Yahoo News and has been a guest on the OCD Stories Podcast. In 2022, she launched JACK Mental Health Advocacy to expand her reach and continue to be a resource (and mom friend) to sufferers and families across the nation.