Leonie Keogh hopes to raise $2,000 for Huntington’s disease, a rare and as yet incurable neurological condition that affects five members and three generations of her family.
On Sunday 20 September, she and a team of friends and relations will take part in the Walk 4 Hope – a four-kilometre event in Lennox Gardens to show people affected by the disease that they are not alone.
“People don’t really understand the depth of the disease and what it means for the family and carers,” Ms Keogh said. “Partners become carers; children and siblings are affected; and entire families live with the uncertainty and emotional toll of the disease.”
Huntington’s affects thousands of Australians – 8.9 out of 100,000 people nationwide. In Canberra, an estimated 50 people live with the condition, and a further 200 people are impacted, Huntington’s Australia says.
But it remains one of the country’s least-known neurological conditions, Ms Keogh says.
“People describe it as a combination of Parkinson’s, Alzheimer’s, and motor neurone disease,” Ms Keogh said. “It is a devastating inherited condition that slowly takes away a person’s ability to move, think, communicate, and live independently.”
The disease gene was only discovered in 1993. A mutation in DNA causes an abnormal huntingtin protein that damages neurons – affecting someone’s ability to think, plan, swallow, and walk, Ms Keogh said.
“You get mood swings – the emotional side of it – and the physical side affects your movement. Even things as simple as swallowing and drinking become significantly more difficult as the disease progresses.”
Huntington’s typically manifests between the ages of 35 and 50, beginning with involuntary movements, depression, irritability, and progressive decline in thinking and memory, UNSW states: “People lose the ability to work, manage money, live independently, and eventually care for themselves.” Ultimately, patients with the disease often die within 10 to 20 years after onset.
Each child has a 50 per cent chance of inheriting the disease from a parent. Ms Keogh’s father has it; so, she believes, did her grandfather. He was diagnosed with schizophrenia and depression, and put in a mental institution.
“At least now they’re aware of what it is,” Ms Keogh said.
Four other members of her family are gene-positive, but do not yet show symptoms.
“Watching someone you love deteriorate from Huntington’s is incredibly difficult, and for those family members who carry the gene, there is also the knowledge that they may one day face the same future,” Ms Keogh said. “A lot of people choose not to find out, because it’s a pretty hard thing to know that’s your future.”
Her father, now 78, was diagnosed three years ago, but the family suspected he might have Huntington’s some 15 years ago.
“One of the biggest struggles we’ve found is that a lot of professionals – GPs, even in hospitals – are not aware of the disease,” granddaughter Kim Budgen said.
“We first thought there was something wrong with our father in his early 60s,” Ms Keogh said. “We went to several doctors, and they blew us off: no, no, he’s just getting old. It took over 15 years to get the diagnosis… If Dad had been diagnosed a lot earlier, he might have been able to do a lot more therapy.”
Her father had a fall just before Christmas, and ended up in hospital with a broken pelvis.
“He’s very slow now, and very frail, from someone who had been a pretty tough guy,” Ms Keogh said.
“We’re very lucky he’s active – he doesn’t sit around, so I think that’s helped him. On the other side, it hasn’t, because he still thinks he can climb up ladders, and we have to keep him away. But everything – swallowing, talking – becomes difficult. He needs speech therapy. His muscles are wasting away.”
His wife is his primary carer.
“It puts a lot on our mother,” Ms Keogh said. “Luckily, there are four daughters in Canberra still, so we try to support as much as we can.”
Her parents are in Queensland this week.
“Overseas holidays are out of the question, because it’s just too hard to manage,” Ms Keogh said. “Dad can’t lift heavy bags, and the cognitive decline is happening, so Mum has to do most of the thinking.”
At the moment, treatment is limited – medication to control movement eventually stops working, Ms Keogh said.
“They can give you drugs to tame the tremors, but they can’t stop it, and the disease progresses.”
Last year, British researchers announced a breakthrough: gene therapy given during brain surgery slowed the progression of the disease by 75 per centAnd what would the , the BBC reported. One medically retired patient returned to work; another, expected to need a wheelchair, is still walking. But Professor Bryce Vissel, a UNSW expert in neurodegenerative diseases, urged caution: he said the results were early, unreviewed, and based on external comparisons, and treatment may be expensive.
Walk 4 Hope will be held in Lennox Gardens on Sunday 20 September.
Across Australia, peak national body Huntington’s Australia hopes to raise $130,000, and $6,000 in the ACT.
In Canberra, money will help to run support groups, non-clinical counselling sessions, education and training programs, and other services.
Huntington’s Australia has been incredibly helpful, Ms Budgen said: the organisation provides support groups, keeps the family updated on research, and connects them to neurologists, speech therapists, physiotherapists, and NDIS services. But the counsellor is stretched: she covers all of NSW and the ACT.
“Raising more awareness and providing support to Huntington’s Australia to provide knowledge and awareness to nonprofessional services would benefit those impacted to build their understanding and support people better,” Ms Budgen said.
The four-kilometre distance is symbolic: the gene responsible for Huntington’s disease is on chromosome 4.
“We would love to see Canberrans come along and walk with us,” Ms Keogh said. “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.”
Walk 4 Hope will be held in Lennox Gardens, Yarralumla, on Sunday 20 September. Arrival and merchandise available from 9.30am; event starts at 10am. Sausage sizzle and raffle draw to follow. Ticket price: family (2 adults & 2 children): $50. Adult (18+ years): $25. Child (4 to 17 years): $10. Infant: free. To register to walk: https://www.walk4hope.org.au/canberra. Dogs and prams welcome.
To donate: https://huntingtonsaustralia.grassrootz.com/walk-4-hope-general-donations-2026/donate
