Over the last six months your donations have made a substantial difference to people affected by mitochondrial disease (mito). You have enabled services to support patients today, while providing hope for the future by funding research and advocacy. Thank you!
Your donations have delivered:
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.
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 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.
$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.
450,000 people heard about mito through The Bloody Long Walk 2019 national series which expanded to ten events and raised $3.5 million to help families affected by mito.
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.
13 Information Days, Mito Connect Calls and Support Groups held across the country.
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 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.