Welcome to the 2025 Community Conference!

Here, you can watch presentations from our recent conference, where speakers shared insights on a range of important research topics. These talks cover areas such as clinical trials, inclusion and exclusion criteria, updates on Enroll-HD, and new developments like Skyhawk’s SKY1505. Whether you are a member of the community, researcher, or an advocate for the HD community, these videos provide valuable information to help you stay informed and engaged with the latest in the field.

Exploring Preclinical Studies in Huntington’s Disease with Professor Anthony Hannan

Professor Anthony Hannan leads internationally recognised research into brain plasticity and how it is affected in neurodegenerative diseases like Huntington’s disease. Based at the Florey Institute in Melbourne, his team explores how genes interact with life experiences such as stress, physical activity, and mental stimulation to influence disease progression. His preclinical work using mouse models has offered key insights into how Huntington’s may develop even before symptoms appear, helping pave the way for potential early interventions. In his presentation at the Community Conference, Professor Hannan discusses how environmental, and lifestyle factors could help modify the course of the disease, highlighting new directions for improving brain health and delaying onset.

Global HD Research Update & The Story of HDBuzz

In this special conversation, Professor Edward Wild, a globally recognised leader in Huntington’s disease research, shares the latest updates from the global HD research landscape. From biomarkers to clinical trials and translational breakthroughs, Professor Wild offers expert insight into where HD science stands today and what lies ahead. As co-founder of HDBuzz, he also reflects on its origins, evolution, and continued role in making HD research accessible to families and communities worldwide. With a rare blend of scientific depth and compassionate advocacy, Professor Wild brings clarity and hope to the conversation around Huntington’s disease.

Bridget’s Story: Reflections on Participating in a Clinical Trial

In this heartfelt conversation, Bridget — a filmmaker, partner, and advocate, shares her personal experience of participating in a clinical trial for Huntington’s disease. After learning in her 30s that she had inherited the HD gene, Bridget chose to document her family’s journey in the acclaimed documentary The Inheritance, shining a light on the impact of HD across generations. Now, she reflects on what it was like to take part in a clinical trial, what she learned from the experience, and her take home message for others in the HD community considering this path. With honesty and strength, Bridget offers insight into hope, contribution, and the power of showing up — for research, for community, and for family.

What Is Inclusion Criteria in Clinical Trials?

In this informative conversation, Associate Professor, Dr Samantha Loi, neuropsychiatrist at Melbourne Health and Deputy Head of Neuropsychiatry at the University of Melbourne, unpacks the concept of inclusion criteria in clinical trials. Drawing on her expertise in neurodegenerative and psychiatric conditions, Dr Loi explains how clinical, cognitive, and functional assessments help determine eligibility for HD trials, services, and supports. With clarity and compassion, she explores the medical and ethical reasoning behind these criteria, helping families and individuals better understand what to expect and how to navigate the clinical trial process.

The Ethics of Undergoing Predictive Testing for Huntington’s Disease

In this powerful conversation, Professor Clare Delany and Associate Professor Danya Vears explore the complex ethical challenges individuals and families face when considering predictive genetic testing for Huntington’s disease. With deep clinical and academic expertise, Professor Delany, a leader in clinical ethics, and Associate Professor Vears, a genetic counsellor and internationally recognised expert in the ethical implications of genomic technologies, unpack the emotional, relational, and societal dilemmas that arise in the absence of a disease modifying treatment. From family communication and informed consent to identity, uncertainty, and choice, this discussion offers a compassionate and practical guide for those navigating the life changing decision of whether or not to undergo predictive testing for HD.

What is Enroll-HD and Why Does it Matter?

In this conversation, Ruth Fullam, a leading voice in HD research, breaks down Enroll-HD – the world’s largest observational study for Huntington’s disease. From how to join and participate, to the powerful role Enroll-HD plays in global research, this discussion explores why studies like this are essential for developing future treatments. Discover how Enroll-HD supports clinical trial readiness, enables scientific breakthroughs, and empowers families and researchers alike in the fight against Huntington’s disease.

If you are interested in knowing more, please head to Enroll-HD website designed for patients and patient families.

What Could SKY-0515 Mean for the HD Community?

Join Dr. Sergey Paushkin, Chief Scientific Officer at Skyhawk Therapeutics, and CEO Bill Haney as they explore the science and vision behind SKY-0515 — a promising, orally available small molecule therapy being developed for Huntington’s disease. In this insightful conversation, they discuss the potential of RNA-targeted treatments, the progress of ongoing clinical trials, and what this innovation could mean for individuals and families impacted by HD.

Want to know more about the ongoing clinical trial? Check out the website or if you are residing in Australia, talk to your Huntington’s specialist or reach to us

What Is Apathy in Huntington’s Disease?

Dr. Sarah Mason is a Senior Research Associate at the University of Cambridge and a Clinical Psychologist at Cambridge University Hospitals NHS Foundation Trust. Her work focuses on the psychological and behavioural impacts of neurodegenerative diseases, with a particular emphasis on HD. Dr. Mason’s research explores how symptoms such as apathy affect not only individuals living with HD but also their caregivers and loved ones. Her recent work is in understanding Apathy in Huntington’s Disease and it’s impact on the quality of life of caregivers and loved ones; she investigated the emotional and relational consequences of apathy and its broader implications for caregiving and support networks. Drawing on her clinical and academic expertise, Dr. Mason presented the key findings from her research and discussed the importance of understanding and addressing apathy as part of holistic HD care.