The Mito Foundation is fortunate to work with incredible individuals who go the extra mile to support people with mito. Each year we recognise some of those whose exceptional efforts have had a significant impact on the mito community.
Kim’s continual commitment to the Australian mito community makes her a deserving recipient of this year’s Chairman’s award.
As a member of our Mito Community Advisory Panel, including her current role as co-chair, Kim has contributed to a range of Mito Foundation projects in research, advocacy and support services. As a peer support volunteer, Kim has been a driving force in bringing together the mito community in south eastern Queensland and provides direct support to others throughout Australia.
What makes Kim special:
“Kim stops at nothing to bring awareness to mito and support the community. Kim is at every event, fundraising every year and always showing up for those when they feel they can't show up for themselves.”
Shelley is an incredible asset to Mito Foundation and to the mito community. As a facilitator of both Mito Meet-Ups and Wellbeing Mito Connect Calls, Shelley contributes her professional skills as a psychologist alongside her lived experience of mito. As a long time member of our Mito Community Advisory Panel, Shelley is always generous with her advice for the Mito Foundation team to ensure that the work we do addresses the needs of the mito community.
Shelley also played a key role in the campaign to legalise mitochondrial donation in Australia, a courageous and generous ambassador for this cause.
What makes Shelley special:
“Shelley is most deserving of an award for her tireless support of members of the mito community across Australia. She is incredibly generous with time and her knowledge.”
Diane has generously given her time to several advocacy projects and provided insights from her personal and professional perspectives. In the design of her PhD project, Diane is shining a light on the experiences of families with multiple members with disabilities and raising awareness of mito with researchers in new fields.
In addition to her advocacy contributions, Diane makes an exceptional contribution to our Peer Support Network including by delivering training for fellow mentors, increasing everyone's knowledge and capabilities.
What makes Diane special:
“Diane has been an unwavering pillar of support, offering invaluable assistance to numerous individuals within the mito community.”
Ritchie has contributed significantly to our advocacy work for many years. He has been generous in sharing his personal experience of mito and his professional skills and experiences. He's helped drive change, particularly in areas related to mitochondrial donation, improving diagnosis and improving health care.
What makes Ritchie special:
“Ritchie is a pleasure to work with and brings a fresh perspective to many of our projects.”
Since 2021, Leigh and Laura’s Living the Green team have enthusiastically walked in multiple Bloody Long Walk events. Their team has frequently been one of the top fundraisers and they have generously shared their mito story, helping people understand mito by hearing about how mito affects their son Tyler.
Leigh has also organised fundraising through his workplace, including matching gifts and a fundraising event.
What makes Leigh and Laura special:
“Leigh and Laura are incredibly enthusiastic and committed fundraisers. Our Victorian Bloody Long Walk events just wouldn’t be the same without their Living the Green team”
Dr Rundle’s nomination describes the incredible dedication she has shown:
“Abby has been my GP for several years and has gone over and above her role, taking time out of her weekends and days that she is not working to care for me. She has made additional efforts to liaise with other specialists and has taken the time to listen to my concerns. My appointments are never rushed and she always remembers what is happening from our last appointment.
Abby has gone the few extra miles to understand mitochondrial disease and has learnt a great deal in her discussions with my mito specialists. I am extremely lucky to have such amazing support as she coordinates my care so well and I really feel validated. Thank you, Abby, for your incredible dedication in a very difficult journey.”
Dr Linda’s nomination describes the critical role she plays in the health care team of her patient with mito:
“Dr Linda has been an incredible support for me while I journey through the myriad of mito symptoms. She has gone out of her way to research mitochondrial disease and the effects of the disease on the various parts of the body. Dr Linda also researches all medications and supplements before suggesting their use. She stays in regular contact with my neurologist, ensuring that my treatments are as wholistic as possible.”
Dr Manser’s nomination demonstrates how appreciated he is by his many patients with mito:
“David has been incredibly supportive and a very important part of my medical care over the past couple of years. He has gone above and beyond in collaborating with my local specialists and GP to ensure that I am well cared for. When other doctors would not listen to me, he asked questions and ran tests to get to the bottom of my health issues and finally gave me some answers.
I am incredibly grateful to have crossed paths with David and I know that he will achieve great things in the future.”
Dr Winkel’s nomination describes the impact he’s had on his patient who lives with mito:
“Dr Antony Winkel has been a part of my medical team since first being diagnosed and has gone above and beyond with my care. Antony has researched mitochondrial disease and had discussions with other healthcare professionals about best practices and treatments.
He has always made himself available for my care and has even checked in after hours if he has been concerned with any of my symptoms. He keeps in contact with all other members of my healthcare team so that everyone is on the same page. I can't thank him enough for all that he has done.”
Prof Mackey’s recent genetic epidemiological project builds on his track record of high impact mito research. This work improved knowledge about the prevalence of genetic variants associated with a form of mito called Leber hereditary optic neuropathy (LHON) in the general population.
LHON causes sudden and irreversible vision loss. The research team found that 1 in 1,000 people have a genetic change predisposing them to LHON, but less than 2% of them lose vision.
As genomic testing becomes more available and less expensive, many people will have LHON changes identified as "incidental" findings. Prof Mackey's findings will inform genetic counselling and reassure most people with such incidental findings as having a very low risk of vision loss. This is an important contribution to the mitochondrial genetics field.