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

Clare Stuart is the Policy and Advocacy Manager for the Mito Foundation, advocating for improvements to healthcare, disability and social support for people living with mito.

She holds a Masters in Public Health and has contributed to policy development at NSW Ministry of Health and managed an Australian rare disease organisation.

Clare played a key role in the foundations of Rare Voices Australia, and was also a steering committee member for the National Strategic Action Plan for Rare Diseases.

Her dedication to improving the lives of those who live with mitochondrial disease and rare conditions is informed by her personal experience as the sister of Lizzie, who lived with a rare genetic condition (tuberous sclerosis complex.)
Clare Stuart https://www.linkedin.com/in/clare-stuart-84344443/
Mito Foundation https://www.mito.org.au/

Mito Foundation Facebook https://www.facebook.com/MitoFoundation/

Mito Foundation LinkedIn https://www.linkedin.com/company/mito-foundation/

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