Bold opening: A 30-year milestone in Huntington’s care reveals not just history, but a living story of resilience and hope. And this is the part most people miss: collaboration and courage built a network that transformed a silent disease into a connected, informed community.
Westmead Hospital’s Huntington’s Disease Service recently celebrated three decades of service, marked alongside the Huntington support association’s 50th anniversary. For much of the 20th century, Huntington’s Disease (HD) was hidden and stigmatized. The turning point came in the mid-1970s, when dedicated individuals, patient groups, and clinicians broke down barriers and connected families affected by this neurodegenerative condition.
HD is rare, and rarity often equals isolation. It begins subtly, typically between ages 30 and 50, and affects movement, thinking, and emotion. What starts as a simple twitch can, over decades, progress to immobility. Prof Clement Loy, who has directed Westmead’s HD Service for 16 years, reflects on the journey: before the 1970s, HD families had little specialized medical or other support.
Two women are highlighted for their transformative roles. Robyn Kapp OAM was the backbone of Huntington’s NSW and instrumental in establishing HD services at Lidcombe Hospital. Professor Elizabeth McCusker OAM founded the first HD clinic at Lidcombe in 1988. When Lidcombe closed in 1995, McCusker pressed forward with a plan for a multidisciplinary service capable of addressing HD families’ complex needs, and Westmead Hospital answered the call.
The identification of the HD gene in 1993 opened new possibilities. People could now learn whether they carried the disease-causing genetic expansion. Each child of a parent with the HD gene expansion has a 50/50 chance of inheriting the condition, while adults may choose genetic testing to determine their own status. In response, the Westmead HD Service and patient organizations collaborated with geneticists and counsellors to establish genetic testing services, helping families navigate this challenging decision.
Today, Westmead’s HD Service provides multidisciplinary neurological and allied-health care, with outreach across New South Wales and participation in clinical trials and observational studies contributing to national and international research efforts.
The 30-year anniversary event, organized by Dr Therese Alting and others, honored those who have pursued better lives for people with this complex genetic condition. Lenni Duffield, CEO of Huntington’s Australia, joined the celebration, emphasizing the community’s role in sustaining hope. He noted that finding one’s people and community fosters a sense of belonging and reduces the burden of repeatedly telling one’s story.
Huntington’s Australia supports individuals with symptoms—estimated at about 2,200 in Australia—as well as those at risk, unaffected family members, and caregivers. While a cure remains elusive, symptomatic treatments provide meaningful relief, and current genetic trials offer significant hope for the future.
