UCB Australia proudly provides grants in neurology to help support patients
Funding support for Myasthenia Alliance Australia (MAA) conference
UCB Australia is proud to provide funding to support the Myasthenia Alliance Australia (MAA) National Conference, which is an educational and networking event aimed at people living with myasthenia gravis (MG), as well as their families, friends and other interested parties.
Both neurologists and state association members find this conference valuable for sharing up-to-date patient friendly information, supported by the most recent research and advice in MG. The networking component of the conference is also an important opportunity for people with MG to have quality time to learn and share ideas with other people living with the same rare condition.
The MAA has held four national conferences since its inception ten years ago, which relies on funding support and volunteers. Keynote speakers have given their time freely for these conferences and have negotiated venues at a reasonable price. Funding from UCB Australia allows the MAA to keep the registration costs as low as possible.
Grant awarded to Griffith University for Dravet syndrome carer burden survey
UCB Australia is committed to funding research gaps in Dravet syndrome (DS), a severe life-long condition that begins in infancy and involves complex care.
Recent studies have begun exploring the impact of DS on caregivers and the family environment, revealing substantial challenges. Studies from outside Australia have reported increased stress, anxiety, depression, and stigma levels as well as a lower quality of life among parents of children with DS. However, no research has previously focused on the burden of caregiving in a cohort of Australians who care for a person with DS.
With funding support from UCB, researchers from Griffith University aim to fill this gap by developing a survey using patient-reported outcome measures to assess the impact of caring for a patient with DS on Australian caregivers. The survey will evaluate caregiver quality of life, health utility, depression, anxiety, and financial impact, exploring associations between these outcomes. The study will recruit over 50 patients with DS, which is expected to demonstrate the significant burden of caregiving for patients with DS. UCB is supporting this project by providing advice on the design of the survey, interpretation of the results, and will liaise with external partners to assist with patient recruitment
UCB Australia and Epilepsy Action Australia partnership with Lachlan “Purple Wiggle” Gillespie
To celebrate Purple Month in March 2022, UCB Australia partnered with Epilepsy Action Australia and its ambassador “Purple Wiggle”, Lachlan Gillespie, to launch the third instalment of the LOOK for Epilepsy initiative. The main aim of the campaign was to show the nation why every Australian should understand and care about epilepsy, emphasising that it does not discriminate.
In order to generate interest and awareness, Lachlan, dressed in his Purple Wiggle uniform, shared his personal connection to epilepsy through a video, which also featured his niece who lives with the condition. This was a great opportunity to give a face to epilepsy and show the real-life impact it can have on a family – both the positive and negative. The campaign ran throughout Purple Month, and was published across Epilepsy Action Australia, Lachlan, and UCB’s social channels including Facebook and Instagram.
By partnering with Lachlan, the LOOK for Epilepsy initiative saw a tenfold increase in reach, impressions and engagement from the previous year. The Wiggles were so moved that it was also shared across their social accounts, which was not part of the contract, but testament to the creative and campaign.
Research grant for childhood epilepsy research
On 27 October 2023, UCB Australia partnered with Epilepsy Action Australia for the ‘Together for Severe Childhood Epilepsy’ event, joined by Her Royal Highness Princess Astrid of Belgium to announce a research grant aimed at achieving early diagnosis and better outcomes for children living with severe genetic childhood epilepsy. Several families were present at this event and were entertained by the Epilepsy Action Australia ambassador Lachy “Purple Wiggle” Gillespie as they shared their special stories about how epilepsy impacts their lives with the Princess.
This research grant is the next step in a journey that began with the Gene-STEPS pilot study—an international multicentre effort to evaluate rapid genome sequencing in infantile epilepsy. The results of this study emphasise the importance of longitudinal follow-up in demonstrating the significance of rapid diagnosis. Such timely diagnoses are crucial in enhancing clinical outcomes, quality of life, and ultimately, economic well-being. The ripple effect of this research will not only inform advocacy and policy decisions but also change the lives of many Australian children and their families.
UCB Australia and Epilepsy Foundation partnership for the Walk for Epilepsy campaign
In 2023 and again in 2024, UCB Australia was proud to partner with the Epilepsy Foundation for the Walk for Epilepsy campaign through the Treadmill Challenge. This is a fundraising and epilepsy awareness campaign that takes place annually throughout the month of October. The campaign was started by the Epilepsy Foundation in 2017 as an in-person event at Princes Park, Carlton. However, in 2021 the campaign shifted to an online fundraising event due to the COVID-19 pandemic, encouraging people to set their own distance goals and organise their own time to walk. Walk for Epilepsy is now a national event. We are pleased to have increased our support in 2024, becoming a national Supporting Partner of the Walk for Epilepsy, and will do the same for the 2025 event. Anyone can participate by signing up and setting their own kilometre and fundraising targets, as well as fundraising online as individuals or as part of a team.
UCB Australia is committed to supporting research in neurology
The use of internet and devices, and interest in digital and home services: A survey of Australian caregivers and people with generalised myasthenia gravis
UCB Australia and Myasthenia Alliance Australia, October 2023.
A recent survey of people with generalised myasthenia gravis (gMG) and their carers was conducted between 13 and 25 September 2023 in Australia to assess access to educational resources and awareness for medical support via digital channels. Respondents were recruited through Facebook posts and email distributed from Australian gMG patient organisations. A short series of questions were asked, describing how frequently they use the internet and self-assess their proficiency in accessing this kind of information.
A total of 293 responses were received, with 71.7% aged 60 or over, and majority (64.2%) located in major cities of Australia. Over 80% of patients surveyed reported using the internet every day (n=194/230), with over 75% reporting their skills at using the internet being at least 4-stars out of 5 (n=176/230; 5-stars = excellent), and over 60% rating their skills at using their smartphone at least 4-stars out of 5 (n=144/230; 5-stars = excellent). Other key findings showed that over half of respondents rated an online support program (e.g. nurse support and educational resources) as 4 thumbs up or higher for usefulness (130/230; 5 thumbs up = very useful). More than 80% of respondents were willing to complete a regular survey to measure their symptoms (n=193/230) and over 85% were willing to share information about treatment and symptoms to further research (n=202/230).
Key results from this study will help inform future educational initiatives and provide tailored support related to medications used to treat MG.
AU-OT-2400025. July 2025.