Peter Walsh Scholarship: Huntington’s Disease Victoria chief executive officer Tammy Gardner, Peter Walsh’s sons Simon and Nick, scholarship winners Yennie Lie and Katharine Huyhnh, a PhD professor representing scholarship winner Andrew Gleason, scholarship recipient Jessica Kaplonyi and director of neuropsychiatry at Royal Melbourne Hospital Dennis Velakoulis.
Four of Australia’s brightest Huntington’s Disease researchers have received an injection of funds in the form of a scholarship named in honour of former Kyabram identity, and HD sufferer, Peter Walsh.
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His son, Simon Walsh, said the extended family – with the support of the Kyabram area – has been fundraising in recent years to put money toward Huntington's Disease (HD) research.
“We recently presented this money to the Huntingtons Victoria team, which in partnership with the Hungtington’s Research Group Victoria helped us establish the Peter Walsh scholarship,” he said.
Mr Walsh was 71 when he passed away in August last year, having been diagnosed with the disease in 2005, and showing symptoms of the disease through the mid-1990s.
“Although he was symptomatic for a long time, they weren’t at the level that we knew what they were, meaning he was able to continue to work and be independent for longer than others with the condition,” Simon said.
“HD can sometimes be misdiagnosed with other conditions until testing is completed.”
Following the diagnosis, and with a goal of helping their father and others suffering from HD the family began to run fundraising events.
“We ran a big one back in 2016, a Gatsby-themed night, which had a significant amount of support from community members, businesses and was held at the Kyabram Club,” Simon said.
“We are really proud of what the community has done to help out with minimal or no prompting.”
The middle son of Helen and Peter’s three children, Nicholas, put together another large event at Warrandyte, which was attended by all four scholarship recipients.
The Walsh family is aiming to award the scholarship annually, with Simon suggesting it gives the family the incentive to continue advocating and working to raise much needed funds.
Helen Walsh was the president of Victoria’s HD organisation for several years during the 2000s.
Matthew, the eldest son of the three, lives in Perth.
Simon Walsh said the intent of fundraising was always to put the money toward something where those who contributed could see a direct impact.
“Instead of it going into a ‘bucket’ of funds, it will help the PhD students who already have things in place. Our contribution will be topping up the funding to continue this work,” he said.
Simon said the research work currently happening for neurological conditions like Parkinsons, dementure, MnD and HD could all benefit from each other’s work.
He said, of the Kyabram contibution, his family was really grateful for people’s financial and personal contribution to his family.
“The interest and support they have given to Dad and others who are going through these conditions is amazing,” he said.
A rare disorder, HD is an inherited disease that impacts on a person’s ability to move, think and communicate.
There are medications available to manage symptoms, but there is no cure for the disease. A juvenile form of the disease also has a specific set of symptoms.
The purpose of scholarship is to support PhD students dedicated to research on Huntington’s disease and/or its impacts.
Scholarship honour: Peter Walsh, as Kyabram people will remember him, died last year after living with Huntington’s Disease for some time. His family, with the support of the Kyabram region, has instigated a Peter Walsh Scholarship for university graduates involved in HD research.
This scholarship provides an opportunity for PhD students across Australia to apply for funds that can be utilised as a top up, to assist in the publication of research and/or the purchase of essential equipment to complete research.
Dr Andrew Gleason was one of four scholarship recipients, recognising the work he is doing in studying ferroptosis (death of cells) biomarkers in neurodegenerative disorders.
It will potentially allow for the identification of degeneration and assist with diagnosis.
Jessica Kaplonyi was also among the recipients, her speciality designing improved care at the end of life for people with Huntington's disease, their families, and their caregivers.
This research will re-emphasise the importance of having early, frequent, and documented end-of-life discussions, but also provide a tangible end-of-life intervention co-designed by, and specifically for, the HD community.
Katharine Huynh (computerised cognitive training in Huntington’s disease) and Dr Yenni Lie (managing Huntington’s disease with a multidisciplinary perspective) were the other receipients.
Ms Huynh explained a UK trial reported improved emotional well-being in HD patients and her project would involve one session of cognitive training each week will also be conducted as a remote group session, so participants will be able to meet other individuals with Huntington’s disease.
Dr Lie’s project will decipher how multidisciplinary care may be best delivered to improve the identification and responsiveness to unique patient and caregiver’s needs, promote self-management and enhance the quality of care, quality of life, consumer satisfaction and health outcomes for people with HD and their families or caregivers.
