Mitochondrial Donation Pilot Project Announced!
Learn more about mitoHOPE
What is mitochondrial donation?
Mitochondrial donation is an IVF-based technique that offers real hope for families with certain forms of mito to have healthy children of their own.
Eligible Australian women with a genetic diagnosis of mitochondrial DNA disease will soon have access to mitochondrial donation under clinical trial conditions. The technique involves removing the nuclear DNA from a patient’s egg containing faulty mitochondria and inserting it into a healthy donor egg, which has had its nuclear DNA removed.
As the nuclear DNA is retained, the unique genetic information (that makes us who we are and determines what we look like) is passed on from mother to child, but the mitochondrial defects are not.
mitoHOPE — Mitochondrial Donation Pilot Project
On 2 March 2023, the Australian Government announced that a Monash University led project team will receive $15 million to conduct a pilot program for mitochondrial donation. This funding has been awarded from Australia’s Medical Research Future Fund (MRFF). The project has been named mitoHOPE, with an initial website created as the project is being established.
The program will include a clinical trial to build evidence of the safety, efficacy and feasibility of implementing mitochondrial donation in clinical practice settings. It will also include a research program to refine and improve the techniques available.
The mitoHOPE team closely considered Our Voice: Mito community priorities for the Australian mitochondrial donation pilot when developing the grant application. Mito Foundation is confident the proposed pilot is on track to meet the needs of the mito community. As a partner in this project, Mito Foundation looks forward to collaborating with Monash University, Monash IVF, Murdoch Children’s Research Institute, and other partner organisations.
Mito Foundation has been working with researchers to influence the design of the pilot stage to ensure that it meets the needs of the mito community. This includes when people from around Australia will be able to access mitochondrial donation and how the clinical trial will work with other health care services. We're also identifying ways the mito community can be directly involved in designing how the pilot will work.
If you or anyone you know would like to register your interest in the pilot program please visit the mitoHOPE website.
The Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 was passed in the Senate on Wednesday 30 March 2022. This marked a historic moment for the Australian parliament and an enormous milestone for the mito community.
The passage of Maeve’s Law is the culmination of many years of advocacy and an inspiring example of the mito community working together. We thank all families who bravely shared their personal stories, met with parliamentarians and made heartfelt submissions. Your courage and tenacity made this milestone possible.
Read more about the journey to legalise mitochondrial donation.
What impact will mitochondrial donation have?
Mitochondrial donation will allow impacted Australians to have genetically related children without the risk of them inheriting mitochondrial DNA defects which will drastically limit their life.
An estimated 56 babies born each year in Australia could potentially be saved from inheriting mitochondrial disease.
Aside from the devastating physical and emotional impact on patients and their families, many patients have repeated and prolonged hospital visits, are unable to work and may need full-time care. By protecting the next generation from mitochondrial disease, mitochondrial donation will have positive economic impact by removing this reliance on community, healthcare and social services systems.
These stories highlight the impact on real Australians:
Maeve's Law is named after five-year-old Maeve who lives with Leigh syndrome. Her parents are proud that her life will have even more meaning by helping to prevent other Australian families from passing mito onto their children.
Shelley had never heard of mitochondrial disease until 3 years ago - when her mother experienced a rapid decline in health.
The Beard Family
In May 1997 everything changed for the Beard family when their daughter, Pippa, woke up in severe pain, unable to move.
Pam was diagnosed with MELAS, a maternally inherited form of mito, in her mid-forties.