Beyond the Lab – An Interview Series

We are thrilled to kick off our series with a conversation featuring Professor Anthony Hannan, head of the Epigenetics and Neural Plasticity Group and Research Co-Lead for the Mental Health Mission. As an esteemed researcher and a long-time supporter of Huntington’s Victoria, Professor Hannan brings invaluable insights into the role of environmental stimuli in managing neurological conditions, including Huntington’s disease.

In this edition, Professor Hannan delves into groundbreaking research on the gut-brain axis and its impact on managing Huntington’s symptoms. He discusses the critical connection between gut and mental health, highlighting how these factors can play a significant role in symptom management.

As we edge closer to a disease-modifying therapy, this conversation is essential for steering the community toward effective symptom management in the meantime. Click below to listen to this vital discussion, where Professor Hannan shares the latest research findings and his perspective on the importance of mental wellbeing in living with Huntington’s disease.

In this edition, we’re excited to feature Ji-Shen Loong, a doctoral trainee in Clinical Psychology and a dedicated board member at Griefline. Ji-Shen’s research is centered on developing a holistic approach to wellbeing within the Huntington’s community. His work is driven by the belief that true wellness should reflect the lived experiences and expectations of the community. Through his research, Ji-Shen seeks to create a holistic model of wellbeing that resonates with individuals affected by Huntington’s disease, as well as their families, caregivers, and loved ones. His approach is deeply collaborative, involving the community at every stage to ensure the outcomes are both accessible and empowering.

Join us as Ji-Shen shares his unique insights on what it means to live well with Huntington’s disease. His conversation offers a fresh perspective on holistic wellness, emphasising the importance of defining wellness through the eyes of the community.

In this edition, we are sharing this insightful interview with Ajantha Rajasekar, a seasoned Clinical Trial Manager, who sheds light on the evolving landscape of clinical trials. In this conversation, Ajantha explores how human research studies have advanced to address ethical concerns and prioritise participant well-being, underscoring the vital roles of regulatory authorities and ethics committees in safeguarding the integrity of these studies. This interview demystifies the informed consent process, emphasising how it empowers participants by ensuring they are fully informed and have the autonomy to withdraw at any time. She clarifies the role of placebo treatments, explaining their design to protect vulnerable populations while contributing to meaningful research outcomes.

Additionally, she outlines the practical measures taken to prevent participants from incurring travel and accommodation costs, ensuring that clinical trials are accessible to all. Ajantha also discusses initiatives by the pharmaceutical industry to promote equitable access to medical interventions, reflecting a growing commitment to diversity and inclusion. Click below to better understand clinical trials and what it means to participate in one.

In this episode, we talk with Cali Roiboit, a Provisional Psychologist and PhD candidate in Clinical Neuropsychology at Monash University. Cali’s research focuses on identifying the cognitive skills that most impact the daily lives of people with Huntington’s Disease (HD) and their loved ones. She also examines whether current cognitive assessments accurately capture these essential skills and how changes in cognition affect everyday life.

Here is a special episode featuring Professor Ed Wild, a leading researcher and one of the co-founders and editors-in-chief of HDBuzz. As Professor Wild and Jeff Carroll step down from their roles, we take this opportunity to reflect on HDBuzz’s impact and thank them for their incredible work in making clinical research accessible to the HD community.

In the latest edition of Beyond the Lab, we dive into the vital role of genetic counsellors—who they are, what they do, and why their work matters. This six-part video series features in-depth conversations that unpack the often-overlooked world of genetic counselling in a clear and accessible way. Joining us is Joshua Schultz, an educator and certified genetic counsellor, who helps us better understand the profession and empowers the community to make informed choices about engaging with genetic counselling.

Join Tammy Gardner in conversation with Prof. Flaviano Giorgini as they explore the Scientific and Bioethics Advisory Committee (SBAC) and its role in reviewing and supporting Huntington’s disease (HD) research. The discussion goes beyond the SBAC to shine a light on the importance of bioethics committees; why they exist, how they ensure research remains fair and ethical, and the impact they have in shaping the future of HD clinical trials and drug discovery. Whether you are a researcher, a person living with HD, a family member, or simply curious about the science and ethics behind medical research, this episode offers valuable insights into the systems that safeguard and accelerate progress.

In this episode, we sit down with Cornelia, senior researcher on a groundbreaking peer support study funded by the Summer Foundation and La Trobe University. In conversation with Tammy Gardner, CEO of Huntington’s Victoria, Cornelia shares why it’s so important to hear directly from people who access peer support — rather than relying solely on existing literature. She explores the intended outcomes of the study, what meaningful peer connection really looks like, and the personal connection that drives her passion for this work.

👉 If this conversation inspires you, reach out to Cornelia to have a quick conversation with her.

👉 Download the study flyer here 

This is a powerful conversation about listening, lived experience, and shaping research that truly reflects community voices. 💙