Thank you! In 2019 Bloody Long Walkers and their Sponsors helped the Mito Foundation deliver vital research and services, including:
$1.89 million in additional research funding
$1.89 million in additional funding by the Mito Foundation was committed to vital medical and research projects.
Reduction in wait times for mito patients
50% reduction in wait times for the Royal North Shore Hospital Mitochondrial Disease Clinic as a result of the pilot study "A Case For A Virtual Mitochondrial Disease Telehealth Service" led by Prof Carolyn Sue. Enabled by $145,000 funding from the Mito Foundation, this eHealth video-conferencing service is now fully operational and provides specialist care to patients all over Australia, including regional and remote areas.
Advocating for mitochondrial donation
Three Mito Foundation representatives participated in the Mitochondrial Donation Expert Working Committee as part of the NHMRC (National Health and Medical Research Council) public consultation process. The foundation's active advocacy continued with the engagement of political stakeholders, speaking roles at public consultation events while mobilising and supporting the mito community to make a meaningful contribution.
Patient Pathways Program launch
Patient Pathways Program launched to develop tailored care plans for mito patients across the country while providing education, support and connection with existing services. The Patient Pathways Nurse works directly with clinics to improve the mito patient experience.
$1M USD pledged by the Leigh Syndrome
$1 million USD collectively pledged by 5 international organisations to improve diagnosis, develop treatments and cures, and optimise clinical care for those affected by Leigh syndrome. This exciting multi-year collaboration between the United Mitochondrial Disease Foundation (USA), People Against Leigh Syndrome (USA), Lily Foundation (UK), Mitocon Onlus (Italy) and the Mito Foundation (Australia) is the first of its kind.
33 Mito Information Days in Australia
33 Information Days, Mito Connect Calls and Support Groups held across the country.
15.4m reached - mitochondrial donation awareness
15.4 million people reached by 392 media articles raising awareness and education of mitochondrial disease during the public consultation on mitochondrial donation. With public support, this potential legislation change would allow Australian families to access mitochondrial donation, a potentially lifesaving IVF technique.
460 people have joined the Mito Registry
460 patients joined the Mito Patient Registry since establishment to enable them early access to clinical trials and help identify future support needs.
152 GPs completed mito education module
152 GPs completed the Maybe it's Mito education module since launch to improve the detection and understanding of mito and increase rates of diagnosis. This will help thousands of Australians by facilitating earlier access to specialist care and improved symptom management.