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STROKE 2023 (Australia): Putting the spotlight on Lived Experience

Updated: Aug 30, 2023

A Fresh Perspective on Conferences

Having experienced my fair share of scientific conferences (see my posts: "STROKE 2018" & "UK Stroke Forum") and being deeply entrenched in the world of stroke survivorship through Genyus Network, I can confidently say that most gatherings can be a tad monotonous. These events often sideline the crucial narratives of those of us who've navigated life following life-altering trauma. While the spotlight tends to illuminate prevention and clinical management, the profound stories of survivors usually remain in the shadows. But then, STROKE 2023 has emerged – the combined annual conference of the Stroke Society of Australasia and Smart Strokes – and it brought a breath of invigorating change.


Saran Chamberlain: Illuminating Lived Experience

This year's conference launch was groundbreaking, and much of this credit goes to Saran Chamberlain. An astute businesswoman, a resilient stroke survivor, a Genyus Network member, and now a superstar speaker, Saran took the stage as the first individual with lived experience to address the entire delegate community. By offering glimpses of her journey, she altered the focus of the conference narrative, casting light on the invaluable contribution of lived experience and the transformation she envisions for the realm of research. Saran's presence marked the commencement of a conference that championed lived experience – and by the end of the opening session, I have no doubt that the value of people with lived experience was on the minds of everyone watching.


Dedicated to Engagement

A substantial part of the day was dedicated to immersing ourselves in the realm of lived experience engagement. The execution was awesome, whether from researchers or resilient survivors themselves. Adrian O'Malley, a dedicated father, formidable survivor, and stroke warrior, joined forces with Karly Zachariah, a one-time pop star turned research-focused dietitian. Together, they led a workshop that unveiled the unique power of lived experience in research. The ensuing discussions were robust, establishing a safe haven where fellow survivors could candidly share their stories. There's an undeniable strength in openly expressing vulnerability, testifying to the secure space that was carefully cultivated.


Heartfelt Research: Elevating Lived Experience

As the day progressed, a series of presentations took centre stage, spanning both researchers and those living the experience themselves. The common theme revolved around the monumental significance of involving individuals who've navigated a similar path. The focus was clear – how can this engagement amplify the lives of those with lived experience through meticulous research? The authentic dedication to this cause felt new and inspiring.


Brenda's Guidance, Saran's Encore and Julie's Win

Standout moments were Brenda Booth stepping up to co-chair sessions and Julie Davey taking out the prestigious award for Lived Experience Engagement in research; both are valuable members of Genyus and exude wisdom honed through their vast lived experience and expertise. Saran Chamberlain took the stage once again, this time delving into a research project in collaboration with Liz Lynch. Their candid account of the hurdles and successes in forging a meaningful partnership was genuinely motivating. It underscored the power of collaboration, delivered with an unfiltered authenticity that resonated deeply.



Prominent Presenters: Julie Bernhardt and Brooke Parsons

Among the vibrant array of voices, the insights shared by Professor Julie Bernhardt and Brooke Parsons (lived experience expert), both deeply connected to lived experience research, were significant highlights. Their contributions enriched the day, shedding light on the intricate intersections of research, rehabilitation, and firsthand experiences. Julie's commitment to enhancing outcomes for brain injury survivors struck a chord, and Brooke's survivor perspective added depth and authenticity to the discourse.


Impressive Insights from Newcomers & Seasoned Pros: Professor Natasha Lannin, Dr. Laura Jolliffe and Dr. Dana Wong

Jasmine West, Matthew Berryman, fresh additions to the Genyus family, along with Michael Maher, who aptly refers to himself as the Disabled CEO (or BOSS BOY), also brought impressive insights to the table. Their perspectives injected new vitality into both Genyus Network and the world of stroke survivors, showcasing the power of innovative ideas, fresh voices and candid conversations. Further shoutouts to Professor Natasha Lannin and Dr. Laura Jolliffe for their robust contributions and expert chairing by Dr. Dana Wong. Their expertise, insights and sincere engagement elevated my conference experience, creating an engaging and dynamic atmosphere that left a lasting impact on all attendees.


A Personal Meeting with Professor Lisa Kidd

An additional highlight for me was a 1-1 meeting with a luminary in nursing research, Professor Lisa Kidd. Our four-hour conversation delved into our shared values, visions, and our respective missions in Scotland and Australia. It was exhilarating to witness Lisa's fervent belief in our peer-led approach at Genyus Network. Our discussions ignited the sparks of future collaboration, promising to amplify the impact of lived experience even further.


A Catalyst for Transformation

From dawn till dusk, the room buzzed with energy, a testament to the environment carefully cultivated by the organising committee and the unyielding support of the Stroke Foundation. This event transcended mere scientific metrics; it became a catalyst for profound change and as Adrian championed "We are not going back. This is the new black.". It demonstrated that research isn't just about statistics but about weaving tangible threads of impact into the lives of those who confront the living challenges of stroke.


STROKE 2023: Beyond being a conventional conference, it evolved into a powerful platform that celebrated lived experiences, ignited collaborative fires, and instilled hope for a more inclusive future. As I reflect on it all, I'm reminded that the voices of those who've triumphed through life's trials aren't merely part of the conversation – they are the essence of the conversation itself.



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