Over the last six months your donations have made an incredible difference to people affected by mitochondrial disease (mito). You have funded services to empower patients to manage their health and access the best possible care. Importantly, you have brought us closer to effective treatments and prevention options by funding research and advocacy. Thank you!
In the first half of 2022, your generous donations have delivered:
Hope for future families
1 milestone legislation passed to allow at-risk Australian families to have children without passing on the devastating effects of mito. The Mitochondrial Donation Law Reform (Maeve’s Law) Bill passed through the Senate in March 2022 with a convincing majority of votes.
The voice of the mito community
16 people impacted by mito contributed their views to develop Our Voice: Mito community priorities for the Australian mitochondrial donation pilot to ensure the pilot stage achieves the best outcomes for the mito community.
Identified improvements to specialist care
17 recommendations identified to improve the management of mito patients from a Macquarie University study, funded by Mito Foundation. The findings will be used to influence improvements to specialist care for the Australian mito community.
Submission to support Medicare funding
1 submission to support Medicare funding for reproductive genetic carrier screening. If approved, parents-to-be can choose to find out the likelihood of their baby developing some types of severe childhood mito.
GP education leading to earlier diagnosis
95 GPs completed the Maybe It’s Mito educational module. Earlier detection of mito and increased rates of diagnosis will help thousands of Australians by giving them earlier access to specialist care.
Funding to new research projects
$556,310 in funding was committed to 7 new research projects striving to improve diagnosis and seek effective treatments and cures.
A drug testing pipeline
500 heart organoids created as part of a drug testing pipeline to trial promising treatments in the future.
Increased patient knowledge
4 Mito Connect Calls and 3 Mito Information Days helped families all over Australia to build confidence and knowledge to manage their journey with mito.
Supportive networks to reduce isolation
17 Mito Meet-ups across Australia helped people impacted by mito to reduce their sense of isolation and improve mental health and wellbeing.
One-on-one care and advice
185 support cases through our helpline assisted the mito community to seek a diagnosis, find information or find medical professionals who can improve the management of mito.
Reduced anxiety through dedicated care
21 families received help with tailored advice, care plans and referrals through the Patient Pathways Program. 89% of people reported a reduction in anxiety since joining the program.
New NDIS Navigation Service
24 people with mito used our new NDIS Navigation Service to understand and access vital NDIS support to improve their quality of life.
Greater public understanding of mito
4.6 million people reached by 302 media articles around the passing of Maeve’s Law, raising awareness and knowledge of mito amongst the Australian public.