The Patient Voice Podcast

"I first became involved with advocacy when I saw my parents successfully advocate for improved care at the children’s hospital, from the setup of the home IV program, to the doubling of the funding at both South Australian CF clinics. I learnt from a young age that we can inspire change and that we all have a right to the best available health care. It’s lead to me becoming extremely passionate about health equality, through timely access to medications and the highest level of hospital care. 

In 2013 myself and several passionate members of the CF community formed YesToKalydeco, after we saw our friends overseas gain access whilst the negotiations stalled in Australia. This was the first of four campaigns for these life-changing medications, which have now all successfully been listed on the PBS, significantly improving both the life expectancy and the quality of life for those living with CF in Australia. The advocacy does not stop here though, we still need better treatments, access to supports, and ultimately, a cure. I’m particularly looking forward to working with the CF community as our needs evolve and become more diverse. I’m excited to be progressing from the community-based advocacy to working for CF Together, with resources and a team of highly skilled people, with the common goal of leaving no one behind as we drive progress for the CF community in Australia." - Genevieve Handley

Genevieve Handley https://www.linkedin.com/in/genevieve-handley-188640310/
CF Together https://www.cftogether.org.au/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

My name is Renee Gosney, and I was diagnosed with Stage 3 bowel cancer in April 2019 at the age of 25—completely out of the blue. I underwent major surgery, 4x cycles of chemotherapy over 3 months, and about six months after completing treatment, I was told my cancer was undetectable.

During my treatment, I found it difficult to connect with other young patients facing similar experiences. That led me to seek out organisations that could provide support, which is how I discovered the Queensland Youth Cancer Services Youth Advisory Group (QYCS). I first joined as a member and not long after became co-chair, a role I held for four years until finishing at the end of last year. Through this role, I was actively involved in patient advocacy, helping to create better support networks for young people navigating cancer treatment and survivorship.

As part of my journey, I also underwent genetic testing, which deepened my interest in genomics and its role in cancer treatment and awareness. My involvement allowed me to advocate for greater awareness and accessibility to genetic testing, particularly for young patients facing similar diagnoses. I am passionate about ensuring that others have access to the same resources and information that helped me through my own experience.

Today, I am still cancer-free and undergoing regular surveillance. Outside of personal advocacy, I now run my own business—a reflection of my lifelong love for pets. As they have been my rock throughout my entire journey, providing comfort and companionship from the very beginning.

Renee Gosney https://www.linkedin.com/in/renee-gosney/
WoohooPets https://woohoopets.com/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

Dr. Shyamsundar Muthuramalingam (Shyam) holds a Ph.D. in Chemistry and is a kidney transplant recipient with personal experience in Haemodialysis (HD) and kidney disease.

 He is a key figure in consumer engagement strategies in healthcare, working with the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health and Medical Research Institute (SAHMRI), The George Institute for Global Health, and Kidney Health Australia (KHA). 

Dr. Muthuramalingam is a consumer member of the National Clinical Advisory Committee at KHA and the Australian Medical Council, representing the community in the accreditation of medical degrees. He also serves on the NHMRC-MRFF Interim Consumer Advisory Network. Shyam is also a member of Australian Clinical Trials Alliance’s Consumer Engagement, Equity, and Diversity Working Group, contributing to recommendations for improving clinical trial participation among culturally and linguistically diverse (CALD) backgrounds. In partnership with PRAXIS, Shyam conducts workshops on Enhancing Consumer and Community Engagement in Clinical Trials, aimed at Clinical Trial Coordinators, Managers, early-career staff, and Research Managers.

Dr. Shyamsundar Muthuramalingam https://www.linkedin.com/in/s-muthuramalingam/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

Kate is a bestselling author, award-winning podcast host & founder of The Milkshakes for Marleigh blood donation advocacy movement. She is on a mission to end persistent critical blood shortages in Australia and around the world. Kate’s work is inspired by her eight-year-old daughter Marleigh who lives with Autoimmune Encephalitis and is dependent on Australian plasma donors to survive. 

In May 2024, Kate was invited to address the Women Changing the World Summit in London and was awarded the Global Impact Award: Non-Profit of the Year, 2024. 

At the AusMumpreneur conference and awards in Melbourne, August, 2024, Kate was named:  Woman Changing the World of the Year, 2024;  Author of the Year, 2024; and Podcast of the Year, 2024.

Kate’s book called Milkshakes for Marleigh tells extraordinary tales of survival thanks to Australian blood donors, is available in all good bookstores now!

Kate Fisher https://www.linkedin.com/in/kate-fisher-271b93116/
Milkshakes for Marleigh https://milkshakesformarleigh.org/

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

Karen van Gorp was diagnosed with stage IV melanoma in 2013 and survived through a clinical trial for a new class of treatment. She is Chair of Cancer Voices SA and an executive member of Cancer Voices Australia, where she works to strengthen consumer involvement in health technology assessment (HTA).

Karen also Co-Chairs the Consumer Advisory Group to Melanoma Patients Australia and serves as Deputy Chair of its Board. In these roles, she focuses on education and organisation to empower consumers to engage effectively in HTA and policy development. She is also on the SA Comprehensive Cancer Network Committee and is a Senior Policy Adviser for the SA Business Chamber.

Karen van Gorp
Melanoma Patients Australia https://melanomapatients.org.au/
Cancer Voices SA https://cancervoicessa.org.au/
Cancer Voices Australia https://www.cancervoicesaustralia.org/


Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 

Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections.  After Isabelle survived her life-saving Stem Cell Transplant at 7 months old, Louise went on to join the campaign to successfully advocate for SCID to be added to Australia’s Newborn Bloodspot Screening Panel.  SCID is now detected, diagnosed and treated soon after birth in Australia - before a baby becomes critically ill or passes away.  Louise also sits on the Board of the Immune Deficiencies Foundation of Australia (IDFA), supports other families who have a child born with SCID and is an advocate and peer mentor to families living with any Immune Deficiencies.

Immune Deficiencies Foundation of Australia (IDFA) Website https://www.idfa.org.au/
IDFA Facebook https://www.facebook.com/ImmuneDeficiencyFoundationAustralia/
IDFA Instagram https://www.instagram.com/theidfa/

IDFA LinkedIn https://www.linkedin.com/company/the-immune-deficiencies-foundation-of-australia/ 

Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

Produced by The Podcast Boss

Claire Devine is a best selling artist and emerging ecommerce/personal branding authority. Her works are collected worldwide and she imbues business and art with heartfelt candour, compassion and kindness.
The Granddaughter of celebrated French artists and potters, Claire was born in Toulouse, France and grew up in an art gallery space in Brisbane, Australia. A classical musician and high school teacher, she started painting as a way to pass the evening hours while her handsome Irish husband, Seamus, was away for work.

Claire took a break from her regular work when Seamus became ill and their infant son was diagnosed with partial blindness. This break allowed the family to reprioritise, focus on each other and give energy to Claire’s painting. As popularity for Claire’s work grew, The New Devine quickly evolved from a painting pass time into a serious, full-time business.

Claire’s art comes from a place of deep love for her family because of their circumstances with Seamus’s poor health and sons’ disability - the journey they went through (and continue to travel) to create contentment, joy and focus on family, love and togetherness all feeds and informs her artistic practice. Claire and Seamus have 3 (ex-premature baby) boys, two with albinism and legal blindness and one with Epilepsy like his father. 

Claire lives in a little seaside suburb of North Brisbane and loves coffee, vintage champagne, Dad jokes, yoga and long walks with her 'tame wolf.’

Claire’s Website https://thenewdevine.com/
Claire’s Instagram https://www.instagram.com/thenewdevine/
Claire’s LinkedIn https://www.linkedin.com/in/claire-devine-aa6a761a4/
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 

Produced by The Podcast Boss

Geoff is a dad, husband, blogger, public speaker and an active patient advocate.  Since being diagnosed in 2014 with the terminal blood cancer multiple myeloma, Geoff uses this adversity as a means to lead by example in helping others to become empowered with the challenges that they may face. His advocacy includes working as a volunteer for Peter MacCallum Cancer Centre, Snowdome Foundation, the Walter and Eliza Hall Institute of Medical Research and Myeloma Australia.  In addition, he provides ‘blood buddy’ support to many diagnosed patients, he is a research ‘consumer’ where he supports many research projects, and he is an active presenter where he provides inspiration to others as they navigate their own adversity.  Geoff is also founder/director of MY Mount Eliza Run & Fun Festival, and has raised nearly $400k for research and patient support since 2017. Geoff believes that his diagnosis does not define him, nor limit him, and in fact, powers him towards supporting others, raising awareness and funds for myeloma research.

Geoff’s Website https://geoffnyssen.com/
Geoff’s LinkedIn https://www.linkedin.com/in/geoff-nyssen-5457a31/

Geoff’s Facebook https://www.facebook.com/geoffnyssenspage/
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 

Produced by The Podcast Boss

Ashley is a diabetes advocate, researcher and healthcare professional. Through her lived experience, she's developed a passion for driving patient-centred healthcare service design and ensuring the lived experience voice is involved from conception to research and health service delivery. Ashley has been part of global diabetes advocacy efforts to amplify the voices of the diabetes community, which led to being awarded the Medtronic Bakken Invitation Award in 2019 and the Diabetes Victoria Outstanding Contribution from Lived Experience award in 2023. Ashley sits on various advisory groups including the Diabetes Victoria consumer advisory committee, is a board member of the Primary Care Diabetes Society of Australia and chairs the Diabetes Australia Kellion Advisory Committee.

Ashley’s website Hangry Pancreas https://hangrypancreas.com/

Hangry Pancreas Instagram https://www.instagram.com/hangrypancreas/

Hangry Pancreas/Bittersweet Diagnosis Facebook https://www.facebook.com/bittersweetdiagnosis/

Ashley’s LinkedIn https://www.linkedin.com/in/ashleyng1/ 
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/

Produced by The Podcast Boss

Kate Gough is a passionate advocate and parent, dedicated to raising awareness and heralding improvement for those who are born with Spinal Muscular Atrophy (SMA) and their families.
As the mother of baby Oakley, who was diagnosed with SMA at eight weeks old, Kate brings a personal perspective to her advocacy work, striving to improve the lives of those with SMA and their families by calling for research and treatment advancements, as well as directly bringing about change by advocating for access to SMA screening in QLD.

Move For Oakley Facebook https://www.facebook.com/oakleysSMAadventures
Move For Oakley Instagram https://www.instagram.com/moveforoakley/ 
Our work at Patient Voice Initiative is only possible thanks to the generous support of our Sponsors; for a full list of both our Gold and Silver contributors, please visit our Website. 

Find out more about PVI by visiting our website https://www.patientvoiceinitiative.org/ 

Produced by The Podcast Boss