The Mito Foundation is fortunate to work with wonderful individuals who go the extra mile to support people with mito. Each year we recognise some of the everyday heroes whose efforts have significantly impacted the mito community.
Congratulations to:
Diane has been an extraordinary member of the mito community. Through her active participation in Mito Meet-ups, she has contributed her time, presence, and energy to strengthen connections, foster understanding, and build a sense of belonging.
Her warmth, compassion, and genuine commitment to supporting others have made her a guiding light for people navigating the challenges of living with mito. Diane is a passionate advocate for mental health, recognising that emotional wellbeing is just as important as physical health. She played a pivotal role in relaunching the Mito Wellbeing Calls, helping to create a safe and supportive space where community members feel heard, understood, and encouraged.
Diane’s dedication, thoughtfulness, and unwavering advocacy make her a trusted and respected member of the mito community. Through her efforts, she inspires hope, resilience, and collective strength, demonstrating the profound impact one person can have in empowering others.
Diane brings all of these qualities to her role as a member of the Mito Stories Project advisory group, helping to ensure the project reflects and amplifies the voices of the community.
What makes Diane special:
"Diane’s dedication and thoughtful approach have made her a trusted and respected member of the mito community."
Cameron has shown remarkable dedication to supporting the mito community through his involvement in The Bloody Long Walk. He has taken part in the Newcastle event for two years in a row, walking for his beautiful daughter Audrey who lives with mito. He has been a tremendous force in rallying his community to get behind the cause. This year alone, his team has raised over $38,000 to support the mito cause.
What makes Cameron special:
"Cameron’s dedication and passion for supporting the mito community is truly inspiring: he gives his time, energy, and heart to make a real difference for others."
Mia is a wonderful and supportive co-chair of the Mito Community Advisory Panel (MCAP). She gives her time so generously and is always ready to help others in the community have a voice. Her kindness, encouragement, and lived experience of mito make her an inspiring leader.
This year, Mia has continued to shine as an advocate. She has played an important role on the independent Advisory Committee for the mitoHOPE pilot program for mitochondrial donation, while also leading as co-chair of the Mito Community Advisory Committee. In all she does, Mia works to represent the broader mito community with compassion and determination, drawing on her own experience to ensure decisions are shaped by the people they affect most.
Beyond these formal roles, Mia is always willing to step in and support Mito Foundation’s work in any way she can: from contributing to the clinical trials action plan to being involved in multiple advocacy projects. Her leadership is thoughtful, her support unwavering, and her impact deeply felt.
What makes Mia special:
“Mia leads with generosity and warmth, using her lived experience of mito to make sure the community’s voice is always at the centre.”
Danielle is a passionate advocate for the mito community. She shares her personal story with courage and generosity to raise awareness and inspire change. Alongside her husband Leon, Danielle honours the memory of their children, Airlie and Sonny, who both passed away from a rare form of mitochondrial disease caused by a mutation in the PPA2 gene.
Most recently, Danielle has played a leading role in the campaign to increase the use of genomic testing in coronial investigations (The Coroner's Project). This important advocacy work has been covered in national media and has the potential to provide families with answers and help protect future generations.
In addition to her advocacy, Danielle contributes her lived experience as a valued member of the Mito Stories Project Advisory Group, ensuring the project reflects what matters most to the community. Mito Foundation is deeply grateful for Danielle’s strength, compassion, and unwavering commitment to creating a better future for families impacted by mito.
What makes Danielle special:
"Danielle’s courage and determination turn personal tragedy into powerful advocacy that can change systems, save lives, and bring hope to others."
We celebrate Leigh for his tireless dedication to supporting the mito community and advancing Mito Foundation’s mission. As a valued member of the Mito Community Advisory Panel (MCAP), he is a strong advocate who ensures the voices of the community are heard.
This year, Leigh was a standout panelist at the online launch of Mito Foundation’s 10-year plan to bring more mito clinical trials to Australia. He anchored the discussion in the hopes and needs of the community, helping to shape a brighter future.
Leigh is also a passionate fundraiser. He has completed an incredible 12 Bloody Long Walk events with his team Living the Green. When a knee injury kept him from walking in Melbourne this year, he showed his trademark determination by running a Mito Snags Sausage Sizzle instead, raising more than $1200 and helping his team surpass their goals. He also lights up Chadstone the Fashion Capital green for mito every year and is even developing a line of pins to boost fundraising.
All of this is done while Leigh parents and supports his son living with mito. He never misses a hospital appointment and is truly a tower of strength within his family. With a great sense of humour and a smile always on his face, he inspires those around him with positivity and resilience.
What makes Leigh special:
“Leigh is a powerful advocate who brings his resilience and energy to his role on the Mito Community Advisory Panel, his involvement in developing Mito Foundation’s clinical trials action plan, and his incredible fundraising efforts.”
Melissa was diagnosed with mito a few years ago and has since become a strong voice for raising awareness about the condition. She has generously shared her lived experience to help guide the Mito Stories Project Advisory Group, ensuring the project reflects what matters most to the mito community.
Beyond her advisory work, Melissa has spoken at several events to raise awareness. This includes addressing health professionals at a Monash IVF education session and sharing her story on Vision Australia Radio’s Studio 1 program. Through these efforts, Melissa has helped more people understand mito and the challenges faced by those living with it.
Her passion, openness, and courage in sharing her journey make a real impact, both within the community and beyond. The foundation is deeply grateful for Melissa’s ongoing advocacy and commitment.
What makes Melissa special:
"Melissa’s willingness to share her lived experience helps guide vital projects and opens new doors for awareness of mito in the wider community."
The Decena family participates in The Bloody Long Walk each year in loving memory of Mara, who passed away shortly after birth due to an extremely rare form of mito. Clare, alongside her brothers Amante and Conrad, has made this walk a family tradition, raising awareness and funds for the Mito Foundation while honouring Mara’s memory.
This year, Clare is completing her third Bloody Long Walk and also took part in the annual Cole Classic swim. The family has rallied their community through Team Mara, raising an incredible $22,700 to support Mito Foundation’s mission. Clare also generously shares her family’s story to educate the public about mito and inspire others to participate in fundraising initiatives. The family’s efforts demonstrate the power of love, resilience, and collective action in making a difference for those affected by mito.
What makes the Decena family special:
"The Decena family’s love, resilience, and dedication turn personal loss into powerful advocacy, raising awareness, inspiring others, and making a real difference for the mito community."
Abby, Olly and Jacob have shown incredible dedication to raising awareness for mito. They are always willing to share their family’s story with courage and honesty, helping others to better understand the condition and its impact. By using their voices, they are not only sharing their own journey but also inspiring others to stand with the mito community.
The family also takes part in fundraising activities, showing their commitment to driving positive change. Their efforts help ensure that more people learn about mito and that vital funds are raised for research, advocacy, and support.
What makes Abby, Olly, and Jacob special:
"Their courage, honesty, and dedication in sharing their family’s story inspire awareness, understanding, and action, making a real difference for the mito community."
Shelley plays a key role in connecting and supporting the mito community through her volunteering, facilitation of Mito Meet-ups, and leadership in the relaunch of Mito Wellbeing Calls. She creates safe, inclusive spaces where people feel heard, valued, and supported.
Generous with her knowledge, wisdom, and personal experiences, Shelley fosters a strong sense of belonging and encourages participation from all members of the community. Her warm, approachable nature allows her to offer comfort, guidance, and encouragement, making a lasting impact on those around her.
What makes Shelley special:
"Through her kindness and dedication, Shelley has made a meaningful and lasting impact on the lives of many within the mito community."
Noah and Kat are celebrated for their unwavering support and enthusiasm for The Bloody Long Walk. Their inspirational attitude in the face of adversity and their willingness to share the realities of living with mito have helped raise awareness and educate the wider community.
Noah has been a long-standing ambassador of The Bloody Long Walk and leads the Noah’s Ninjas team as captain, inspiring others with his dedication and positivity. Together, Noah and Kat’s efforts bring hope, connection, and energy to the mito community, showing what is possible when commitment meets compassion.
What makes Noah and Kat special:
"Noah and Kat’s unwavering support, inspirational attitude, and openness in sharing the reality of mito inspire awareness, education, and action."
Bec, Sarsha and Ziggy are an extraordinary family who go above and beyond to support others in the mito community. Sarsha plays an active and inspirational role as a member of the Mito Community Advisory Panel (MCAP), helping to guide Mito Foundation's work with insight and dedication.
Bec gives her time generously to support new families facing the diagnosis of mito in infants and children. Her compassion and encouragement provide comfort and strength during some of the most difficult moments.
Ziggy, their pint-sized mito superhero, radiates joy everywhere he goes. Despite the challenges he faces living with mito, he continues to inspire and uplift those around him.
Together, this remarkable family attends every mito community event and the Brisbane Bloody Long Walk, embodying the very best of community spirit.
What makes Bec, Sarsha and Ziggy special:
"Sarsha, Bec and Ziggy are an amazing family who pull out all stops to support others in the Mito Community."
We celebrate Kim for her compassion, generosity, and dedication to strengthening the mito community. She excels at bringing people together, fostering meaningful connections, and sharing insights that help others feel seen and supported.
As co-chair of the Mito Community Advisory Panel, Kim has been a powerful advocate, ensuring the voices of the community are heard. She regularly steps outside her comfort zone to represent and support others, embracing opportunities to share her story and contribute to the Foundation’s work.
Kim’s warmth, courage, and commitment make her an invaluable leader within the mito community.
What makes Kim special:
"Kim excels in bringing the mito community together, fostering connections and sharing insights with others."
Rebecca and Bailey continue to champion the mito community with extraordinary dedication. Even while on maternity leave, Rebecca and Bailey drove three hours to support the Bloody Long Walk on the Sunshine Coast, bringing their new baby, Arthur, along.
Bailey walked the full 35 km alongside Kim’s Keen Team, and Rebecca and Baby Arthur were there to celebrate the start and finish, with Arthur sporting a miniature Kim’s Keen Team onesie!
Their unwavering commitment, teamwork, and passion for promoting and supporting the Mito community inspire everyone around them.
What makes them special:
"Their unwavering commitment to promoting and supporting the Mito Community is extraordinary."
Matthew is an Online Meet Up Facilitator and a dedicated advocate for the Mito Foundation. He generously shares his knowledge of mito to support others, creating spaces for connection and understanding within the community.
Diagnosed with mito in 2017, Matthew lives with multiple health challenges. Despite these hurdles, he continues to travel, volunteer, and pursue employment opportunities, showing remarkable resilience and determination.
What makes Matthew special:
"Matthew does very well despite what he has to deal with. He does not let it stop him from travelling and wanting to volunteer or find employment."
Kevin is driven by hope and a relentless determination to change the future of mitochondrial disease (mito). With generations of his family impacted by mito including his son who lives with MERRF, he has set an extraordinary goal: to raise $1 million for the Mito Foundation. These funds are already fuelling the search for treatments and, one day, a cure. Through his network, Kevin’s campaign has raised nearly $200,000, a testament to his vision and the generosity of supporters.
Now, he is focused on the next stages: supporting brilliant early-career scientists through the Emerging Scientist Fund and working to expand access to clinical trials in Australia. His campaign is not just about breaking the cycle of mito in his own family. It’s about changing outcomes for the entire community.
What makes Kevin special:
"Kevin is truly inspirational...His continued enthusiasm and willingness to reach out to his connections has been invaluable."
Joel is an exceptional ambassador for raising awareness about mito and advancing the cause of mitochondrial donation. Every year, he goes above and beyond to get the message out, including putting up his annual billboard on the Sunshine Coast, and securing a full-page story on the front cover of the local newspaper in 2025.
He is always ready to help, whether speaking with journalists about Maeve’s Law, supporting awareness initiatives, or finding new ways to generate funds to drive research and support for those affected. Joel’s energy, creativity, and dedication make a real difference in shining a light on mitochondrial disease.
What makes Joel special:
"Joel’s passion, creativity, and tireless advocacy bring attention to mitochondrial disease and inspire others to take action."
We celebrate Karen for her strength, adaptability, and determination in navigating life with vision loss from LHON. Over the past five years, Karen has faced these challenges with courage, gradually adapting to her new life and rebuilding her confidence.
In 2024, she discovered Blind and Low Vision tennis at Prince Alfred Park in Sydney, reconnecting with a sport she loved as a child. Since then, she has competed in tournaments across Adelaide, Melbourne, Brisbane, and Sydney — achieving both wins and placings, and finding joy in her achievements on the court.
Karen’s journey is one of resilience and growth. Her confidence in everyday life has soared, and she continues to inspire those around her with her positivity and determination.
What makes Karen special:
"...over the past five years Karen's life has had a major change adapting to her new life...A worthy recipient of an award."
What makes Sophia special:
"Sophia (now aged 15) has done 8 Bloody Long Walks in the past 6 years and fundraised over $6,000. She's also been an enthusiastic volunteer and supporter, and I'm nominating her for being an all-round Bloody Legend!"
Dr Abby Rundle has been a trusted GP for many years, consistently going above and beyond in her care. She always takes the time needed in consultations and shows a genuine interest in her patients and in mito.
Abby’s positivity, attentiveness, and willingness to respond to both physical and emotional wellbeing make a meaningful difference in the lives of those she cares for. Her dedication has made the journey with mito smoother and more supported for her patients.
What makes Abby special:
"Having such a wonderful GP has made my journey with Mito that much easier and I am grateful that I am under her care."
For the second time, Dr Linda has been recognised for her exceptional care and dedication. Since her first nomination in 2023, her commitment has only grown. She stays ahead by researching new studies, treatments, supplements, and medications, and proactively coordinates with neurologists and specialist teams to ensure a truly holistic care plan. Her appointments are never rushed, and she consistently provides compassionate, attentive support, remembering and acting on her patients’ concerns.
Dr Linda’s blend of clinical expertise and heartfelt care has profoundly improved the quality of life for those she treats.
What makes Dr Linda special:
"Her blend of clinical expertise and heartfelt care has profoundly improved my quality of life."
Jessica Chicksen is an exceptional physiotherapist whose care and support go above and beyond. She shows genuine understanding, compassion, and respect for her patients, taking the time to research mito and its effects on the body while always listening and learning directly from her patients.
Together with the team, Jessica creates a safe and positive environment that acknowledges both the challenges and possibilities of living with mito. Her professional expertise, openness, and personalised care make a meaningful difference to her patients’ health, confidence, and wellbeing.
What makes Jessica special:
"Jess has gone above and beyond in her work with me, showing genuine understanding, compassion, and respect for my needs as a person living with mitochondrial disease."
Nathan is deeply involved in Mito Foundation community events and the broader rare disease sector, supporting community members and organisations in navigating grief and loss. He shares his knowledge generously, offering practical strategies and guidance to help others manage challenging experiences.
Known for his empathy, insight, and focus, Nathan consistently brings clarity and support to those around him, making a meaningful difference in the community.
What makes Nathan special:
"Nathan is consistently knowledgeable, empathetic and focused on practical strategies and is generous with his guidance and insights."
Dr Antony Winkel is a neurologist who consistently goes above and beyond for his patients. His dedication to understanding mitochondrial disease and its impact is exceptional, and he ensures his patients have access to a coordinated multi-disciplinary team to support better outcomes. Dr Winkel is generous with his time, expertise, and resources, making a significant difference to those under his care.
What makes Dr Winkel special:
"His dedication to finding out more about mitochondrial disease and the effects it has on me is second to none."
Michelle is a dedicated senior genetic counsellor who has shown a strong and ongoing commitment to the mito community. She regularly contributes her expertise to mito research projects, helping to advance understanding and improve outcomes for those impacted.
As a member of the Mito Stories Project Advisory Group, Michelle has provided invaluable advice to ensure stories are collected in a safe, respectful, and meaningful way. Her guidance helps ensure the project reflects the lived experience of the community while protecting those who generously share their stories.
The foundation is deeply grateful for Michelle’s expertise, compassion, and commitment to creating positive change for people living with mito.
Sandra is a clinical orthoptist and researcher with a deep commitment to improving outcomes for people affected by hereditary eye diseases, including mito. She brings both professional expertise and compassion to her work, always focused on making a difference for families.
As a member of the Mito Stories Project Advisory Group, Sandra has provided thoughtful advice to ensure community stories are collected safely and meaningfully. Her guidance helps ensure the project reflects the lived experience of the mito community while driving positive change.
The foundation is grateful for Sandra’s generosity, wisdom, and dedication to improving the lives of those impacted by mito and other genetic eye conditions.
Dr Katherine Lim has been awarded for the publication, ‘The burden of mitochondrial disease: healthcare and societal costs'. Working alongside Professor Deborah Schofield and others, this study addresses a significant gap in our understanding of the true costs of mito, both to our healthcare system and to society.
Drawing on data from Australians living with mito and their healthcare usage, the team created a new economic model that reflects the differences in how mito impacts people. One key finding: most of the total costs are from caring for others and loss of work. Direct healthcare costs are a much smaller portion.
This detailed research will help guide government decisions about funding future mito treatments. It also builds on earlier work from 2024, which showed mito costs Australia more than $1 billion a year. This new study suggests the real cost is even higher.
Assistant Professor David Stroud has been awarded for the publication, ‘Untargeted proteomics enables ultra-rapid variant prioritisation in mitochondrial and other rare diseases’.
Working alongside Professor David Thorburn and a large team across Australia and overseas, the study has progressed a diagnostic tool that helps provide answers when genetic/genomic testing results remain inconclusive. Find out more about proteomics.
The nominator said, "... the implementation of proteomics as a standard test from blood samples will have a huge impact on the fast and effective diagnosis of patients with a rapid turnaround time... David has pioneered this area of research and will have a major impact on not only the mitochondrial disease community, but also other rare diseases as this technology becomes accredited and more widespread."
