Canberra Walk 4 Hope raises awareness for Huntington's disease

Leonie Keogh's father is 78 now, and three years ago he received a diagnosis that explained fifteen years of confusion and medical dismissal. Huntington's disease. The word carries weight in her family—it touches five members across three generations, including Keogh herself, who carries the gene but has not yet shown symptoms. On Sunday, September 20, she will walk four kilometres through Lennox Gardens in Canberra with friends and relatives, hoping to raise $2,000 and, more importantly, to tell people affected by this disease that they are not alone.

Huntington's is a rare neurological condition that affects roughly 8.9 out of every 100,000 Australians, yet it remains one of the country's least-known diseases. There is no cure. The condition stems from a mutation in DNA that produces an abnormal huntingtin protein, which damages neurons over time. People lose the ability to move smoothly, to think clearly, to swallow without difficulty, to communicate without struggle. Those who know the disease describe it as a combination of Parkinson's, Alzheimer's, and motor neurone disease all compressed into one body. Symptoms typically emerge between ages 35 and 50—involuntary movements, depression, irritability, progressive cognitive decline—and patients often die within ten to twenty years of onset.

Keogh's father suspected something was wrong in his early sixties. The family visited several doctors. They were told he was simply aging. Fifteen years passed before he received a diagnosis that might have allowed him to pursue therapy earlier, to plan differently, to understand what was happening to him. Now he moves slowly and with fragility. He cannot lift heavy bags. His muscles are wasting. He requires speech therapy. His wife, Keogh's mother, has become his primary carer, managing not only his physical needs but also the cognitive tasks he can no longer handle. A fall just before Christmas sent him to hospital with a broken pelvis. Overseas holidays are no longer possible. Even simple family outings require careful planning and constant vigilance—he still believes he can climb ladders, and his daughters must keep him from attempting it.

Four other members of Keogh's family carry the gene but show no symptoms yet. They live with the knowledge that they may one day face the same future. Some people in similar situations choose not to be tested at all, preferring uncertainty to the weight of knowing. Keogh's grandfather was diagnosed with schizophrenia and depression and spent time in a mental institution—what doctors now suspect was Huntington's, misidentified for decades. "At least now they're aware of what it is," Keogh said. The diagnostic gap remains a problem. Granddaughter Kim Budgen noted that many professionals—general practitioners, even hospital staff—lack awareness of the disease. Early diagnosis matters. It opens doors to support, to therapy, to time spent preparing.

The burden falls heavily on those who care. Keogh's mother manages the household, the finances, the thinking that her husband can no longer do. Four daughters in Canberra try to support as much as they can, but the weight is real. Huntington's Australia, the national peak body, provides support groups, connects families to neurologists and speech therapists, keeps people informed about research developments, and helps navigate NDIS services. But the counsellor who covers New South Wales and the Australian Capital Territory is stretched thin. The organisation hopes to raise $100,000 nationally through Walk 4 Hope events; in the ACT, the target is $6,000. That money will fund support groups, non-clinical counselling, education and training programs, and other services for people living with the disease and their families.

There is a glimmer of hope on the horizon. Last year, British researchers announced a breakthrough: gene therapy delivered during brain surgery slowed disease progression by 75 percent in trial participants. One medically retired patient returned to work. Another, expected to need a wheelchair, is still walking. But caution is warranted. Professor Bryce Vissel, a neurodegenerative disease expert at UNSW, noted that the results are early, not yet peer-reviewed, and based on external comparisons rather than randomised trials. Treatment, if it becomes available, may be prohibitively expensive. The path from laboratory to clinic is long and uncertain.

The walk itself carries symbolic weight. Four kilometres—the distance chosen because the gene responsible for Huntington's disease sits on chromosome 4. Keogh and her team will gather at Lennox Gardens in Yarralumla on the morning of September 20. Registration opens at 9:30 am; the walk begins at 10 am. Tickets range from $10 for children to $50 for families. Dogs and prams are welcome. A sausage sizzle and raffle will follow. Keogh's invitation is simple: "You don't need to have been personally affected by Huntington's to take part. Simply showing up, walking alongside these families or donating lets people know they are not facing this disease alone." In a family where diagnosis took fifteen years and awareness remains scarce, that message—that they are not alone—may be the most valuable thing the walk can offer.