Sean is the CEO and a founding director of the Mito Foundation. He is responsible for the development and execution of the Mito Foundation Strategic Plan and all aspects of Mito Foundation operations.
Sean has lived and worked in Australia, the UK and the US with broad industry experience in both private and government sectors, covering software development, business consulting and general management. Sean holds a degree in Computer Science and Pure Mathematics (BSc) from Sydney University.
With multiple generations of family members affected by mito, Sean is deeply motivated to drive the impact of the work of the Mito Foundation in supporting the mito community and ultimately finding a cure for mito.
Beyond the world of mito, Sean lives with his wife and two children in a tight-knit community in inner Sydney. He has a soft spot for classic rock hits from the '70s & '80s as well as American muscle cars from the ‘60s. Sean also pretends to play saxophone in a Brazilian drumming band.
As General Manager, Toni steers key strategic projects, supports the team in day to day operations and fulfils the Human Resources and Risk Officer requirements.
Toni has over 20 years of experience in Human Resources in a large corporate environment and brings a strong focus on effective ways of working, project management, enabling technology and team wellbeing.
Toni’s passion for the mito cause developed when her daughter was diagnosed with mito in 2016. It is through this unique lens that Toni strives to ensure families are supported, and the pathway to a cure is advancing.
Toni is interwoven with the foundation: she is a regular at The Bloody Long Walk, fundraises for the foundation and engages in activities to raise awareness of mito. While family activities make up much of her home time, she is committed to rediscovering her creative passions.
Emma is currently completing a Masters of Genetic Counselling, a field she is passionate about as it combines medical genetics with her love of conversation and hearing people's stories. Speaking with people to uncover their journey and exploring their understanding, support systems and family communication with warmth and empathy is both motivating and deeply rewarding.
Emma is experienced with supporting families through her work as a Lactation Consultant, with extensive hours of volunteer telephone counselling on the National Breastfeeding Helpline. She is also completing her research dissertation on patient experiences with preconception carrier screening.
Emma joins us remotely from Perth where she enjoys paddle boarding, movies, board games and camping with or without her two children in tow. She dreams of a return to travel one day but for now explores the world from the kitchen, cooking a wide variety of cuisines.
Kana joined the team in May 2019. Hailing from Tokyo, she brings diverse perspectives into communications strategies. She loves managing social media platforms with a passion for effective and fun storytelling to raise awareness about mito.
Outside of the office, she presents a show for a radio station and is proud of her ability to eat a copious amount of chips there.
Kana is in charge of the office playlist until Scott kicks her off.
Penelope is our Direct Fundraising Development Manager and she loves hearing all your fundraising ideas. With 8 years in the charity fundraising sector, with a focus on events, she is always excited and humbled to hear the myriad ways communities find to support the causes they are passionate about.
Penelope has a Masters of International Development, loves to climb mountains and explore the world and her local playgrounds with her family.
As Communications and Marketing Manager, Fiona and her team are responsible for keeping the mito community and supporters up to date on the world of mitochondrial disease and raising awareness among those outside our community. She loves the chance to talk to mito families directly and has deep admiration for those that are willing to share their personal story to help raise awareness.
Fiona spent the last eight years at HeartKids and helped set up a centralised marketing and communications function to support their national and state-based offices. She has experience in marketing, events, sponsorship, innovation and corporate partnerships. She has found her forever home in the charity space - determined to use her powers for good.
Fiona has a passion for travel but now with two young children, a good holiday is anywhere with a kids club! A lover of live music, she is a keen juggler of social, family and work-life and is as comfortable in the moshpit as she is in the sandpit.
After recovering from her first career writing software for insurance companies, Ros studied accounting and joined the Mito Foundation in 2012 as a bookkeeper. She lives in Bondi and swims year-round, although mainly motivated by the coffee afterwards. She also enjoys reading and learning the piano.
Michele began her career in 1984 as a Registered Nurse at Sydney Hospital. She continued to work in the hospital system administering acute and chronic paediatric care and later found herself in the community sector, looking after children with chronic care needs, paediatric case management and as a clinical nurse consultant. She went on to receive a degree in paediatrics, family and community care.
Michele’s passion to help families allowed her to travel to the Middle East and Africa to work in a high care paediatrics unit with a community focus. She found this opportunity educational on a cultural level, where she would exchange western magazines with the local mothers for coffee and beads they made. These encounters enforced a philosophy Michele lives by, which is "To give love by a simple heart by a simple act of caring is better than a thousand heads bent in prayer." (Mahatma Gandhi)
When Michele began her family in 1990, it prompted a change in her career. Michele began work in adolescent health, focusing on school health and later, youth within the Justice health system - a rewarding experience that saw many ‘troubled teens’ turn their lives around. It wasn’t until 2017 that Michele made the transition into adult care, primarily working in aged care.
Nellorie ensures the foundation remains operational with her steadfast support of the team, and additional responsibilities with the services team. With a background in Human Resources and recruitment, she is well-versed in providing solutions regardless of the area of need. Nellorie is passionate about providing quality customer service with a smile (as long as she’s had her morning coffee).
Outside of work, Nellorie can be found on a golf course, testing out a new baking recipe or just kicking back with a glass of red wine.
Jane looks after all things Bloody Long Walk for the Mito Foundation, having joined in 2016. Her background is in business development and marketing/advertising, via a couple of short stints in finance.
Jane has an interest in interior design and can parallel park like a boss.
Hailing from Brisbane Kirralee joins the Support Services team after graduating from a master’s degree in Public Health. Kirralee can be found assisting with helpine calls, Mito Meet-ups, Information Days, Connect Calls alongside implementing projects to improve the lives of those with mito. Kirralee brings lived experience of dealing with a complex and rare inherited multisystem disorder and the difficulty of navigating complex health systems to receive medical treatment and care. These experiences have led to an interest in improving the ability of patients to both understand, explain, and advocate for their own care and medical needs, and a passion for connecting people to care that can offer both evidence-based and positive quality of life outcomes.
Kirralee keeps busy with an array of ever changing hobbies; dabbling in learning to play the wheel vielle, tinkering with computer builds, growing a variety of fragrant flowers, hiking, and socialising with friends over games of the video or tabletop varieties.
Scott joined the Communications team at the start of 2019, bringing an eye for copywriting, design and digital communications. He has proudly worked with a range of not-for-profits including Sydney Story Factory and Oaktree. He is also an active member of Impact100 Sydney - a giving circle that pledges $100,000 to combat community issues.
Scott is an avid fan of music and can prattle on for hours. He worked for a short time as a Music Journalist with a focus on Australian independent artists and now is regularly seen at gigs to support the industry. In 2019, he represented a minor party as a candidate in the NSW State Election.
Scott is in charge of the office playlist until Kana kicks him off.
Aaron has a love for tech, having developed and launched over 100 websites over the last 10 years. He has also developed digital marketing strategy for some of Australia’s biggest brands including Coles Insurance and Kia Australia.
In March 2015, Aaron’s dear friends Sam and Lisa Por sadly lost their daughter Gabriella to mito, which inspired Aaron to volunteer for the Mito Foundation in December 2015. While volunteering, he supported the development of the foundation and Bloody Long Walk websites, including a full rebuild of bloodylongwalk.com.au, before joining the foundation full-time in July 2018.
Aaron is a mad Cronulla Sharks supporter and loves spending time at the beach with his wife and three kids.
Clare leads Mito Foundation's work to advocate for improvements to health, disability and social support for people living with mito. She has a Masters in Public Health, has worked in policy development with NSW Ministry of Health and has managed another Australian rare disease organisation.
Clare played a key role in the establishment of Rare Voices Australia and was a member of the steering committee for the first National Strategic Action Plan for Rare Diseases. Clare's passion for improving the lives of people with mito and other rare conditions is fuelled by her experience as a sister of Lizzie, who lived with a rare genetic condition.
Originally from Sydney, Clare now lives in Orange in the Central West region of NSW. When not working for The Mito Foundation, she can often be found on the ultimate frisbee field, on her stand up paddle board or volunteering as an ethics teacher at her childrens' school.
Ruth is one of the team members you'll meet who answer Helpline calls and queries. She also organises Mito Meet-ups, Information Days and Connect Calls. Ruth believes in the ability of individuals and communities to determine and realise opportunities to create great lives. She works alongside the mito community to co-create services and supports aimed at delivering real outcomes for those impacted by mito.
Ruth has experience advocating for and supporting individuals diagnosed with neurodegenerative conditions, as well as their families and carers. She has helped to navigate complex health and disability systems and worked in partnership with dedicated allied health teams, medical, palliative care, disability and community service providers. Ruth has completed undergraduate degrees in health and postgraduate studies in community and health development.
With a love for all things nature, she can be found in her veggie garden, cycling and hiking or foraging for fibre art materials for eco-printing, weaving and other creative projects.
Ineka leads Research, Medical and Scientific Affairs at the Mito Foundation, with a focus on strategic projects that aim to foster research and clinical capacity toward better diagnosis, treatment, prevention and cures.
She holds a Bachelor of Science (Hons) in Neuroscience through combined studies at the Universities of Oxford and Sydney, and a PhD in Medicine from the University of Sydney. Ineka’s PhD and postdoc research explored the role of mitochondrial dysfunction in neurological diseases like Alzheimer’s and other dementias.
Her great love for science, communication and the desire to make a meaningful difference in the lives of others has led Ineka to work in a variety of areas including academia, Federal Government, the pharmaceutical industry and not-for-profit patient advocacy organisations. Armed with a broad skill set and knowledge base, Ineka is passionate about working to improve the lives and outcomes of mito patients and their families.
Ineka joins us remotely from the Sunshine Coast QLD, where she enjoys spending time at the beach, camping in the spectacular surrounds of the Sunny Coast with her husband and two children, and getting into her new-found love of beekeeping!
Born and raised in Barcelona, Michel has spent much of his working life in the not for profit sector in diverse fundraising and philanthropy roles. He started his career at Medecins Sans Frontieres (MSF), first in Barcelona, then in Sydney where became his second home.
In Australia, Michel has worked in organisations such as the Centennial Parklands Foundation, the World Society for the Protection of Animals, the Australian Museum, the Heart Research Institute, and the Borneo Orangutan Survival Foundation. He is now helping the fundraising efforts of the Mito Foundation developing Philanthropy, Bequests, Corporate Partnerships and Trusts and Foundations.
Michel is fluent in English, Spanish, French, and Catalan. He likes playing words with friends in each of these languages. He is also a keen walker, often in company of his two shitzu-maltese boys Messi and Tofu, and now eyeing one of The Bloody Long Walks.