Westmead Hospital’s Huntington’s disease champion retires

Senior staff specialist at Westmead Hospital’s Neurology Department and Huntington’s Disease (HD) Service Dr Elizabeth McCusker.
Westmead Hospital senior staff specialist Prof Elizabeth McCusker has retired after dedicating more than 40 years to treating Huntington’s disease.

Neurologist, advocate and pioneer Prof Elizabeth McCusker has retired from Westmead Hospital after more than 40 years championing the care of people with a rare but devastating neurological condition – Huntington’s disease (HD).

Prof Elizabeth McCusker undertook neurology training in the USA and worked with Prof Ira Shoulson who was to become a major world leader in HD. After returning to Australia in the late 1980s, she was approached to continue the fledgling HD clinic at Lidcombe Hospital.

Back then no treatment existed for this fatal genetic condition that affects people’s movement, thinking, personality and mood. Longer term medical care was also non-existent or erratic and patients and their families were often left to their own devices.

Clement Loy, Florence Chang and Liz McCusker at the American Academy of Neurology meeting, 2018

Prof McCusker recognised that more could be done and alongside many other pioneers, fought to help these struggling families. 

In 1995 Prof McCusker made the move to Westmead Hospital where she continued the work of building the HD service. This included a multidisciplinary team to meet the complex needs of HD families and community outreach services. This clinic eventually went on to become one of the five largest HD clinics in the world.

Given the relative rarity of the condition, Prof McCusker recognised the importance of collaborating with international research projects and she helped position Westmead Hospital as a key participant in crucial and ground-breaking research.

‘High Tea for HD’ fundraiser event at Westmead Hospital in 2016

Recognised as a world authority on the on the disease, with scores of publications, Prof McCusker was also the driver behind an important prevalence study.

Her list of achievements in HD are vast including her appointment as a Fellow of the American Academy of Neurology and being elected as the Secretary General for the World Federation of Neurology Research Group in HD. She has also helped develop guidelines on genetic testing and privacy laws and has been active in educating generations of doctors.

Walk 4 Hope cake stall at Westmead Hospital, 2016

Multiple generation of families struggling with this complex disease have been under her care. Thousands of people have benefited from her expertise, kindness, and wisdom.

Her name has been synonymous with the disease. Her legacy lives on in the vibrant service that she created and in the hearts of all the family members she has touched. And she has done all of this with the greatest of humility, and compassion for families with HD.

Liz, thank you very much, and congratulations again, for nearly five decades of service to medicine, and especially to families with Huntington’s disease. We will miss your friendship, mentorship, wisdom and encouragement!