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.
What's happening now?
On 13 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 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.
The Australian Government has also created the licensing scheme and drafted ethical guidelines, both important foundations for the pilot stage.
If you or anyone you know would like to register your interest in the pilot program please visit the mitoHOPE website.
Background to government funding
On 10 April 2022, the Federal government announced funding for the pilot stage (AU$15 million) and applications closed on 14 September for a grant that will be awarded to a single consortium. The National Health and Medical Research Council (NHMRC) Embryo Research Licensing Committee will manage the licensing framework.
Mito Foundation has been working with researchers to influence the design of the pilot stage in a way to ensure that 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.
Download our Q&A document for comprehensive information on the next steps. Download our report for our recommendations to key decision-makers to help them design the pilot stage for the mito community.
Background to legislation change
The Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 was passed in the Senate on Wednesday 30 March 2022 with 37 Senators voting in favour of the Bill and only 17 against.
This followed a convincing majority vote in the House of Representatives on 1 December 2021.
This marks a historic moment for the Australian parliament and an enormous milestone for the mito community. The passage of Maeve's Law offers real hope for families impacted by mitochondrial DNA disease to have healthy children of their own.
When introducing the Bill into Parliament in March 2021, Health Minister Greg Hunt made a heartfelt speech and acknowledged five-year-old Maeve Hood who lives with mito and after whom the Bill has been named. You can read more here.
We thank Prime Minister Scott Morrison for his impassioned public endorsements throughout the process. Read more here.
The Government will now move towards the implementation phase to enable eligible Australians to access mitochondrial donation under clinical trial conditions.
Mito Foundation continues to talk to engage our Parliamentarians, including new members of Parliament. This work will build on what they learned about mito from the Maeve's Law campaign, and help them understand what else needs to be done to improve the lives of the Australian mito community.
The power of community-driven advocacy
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.
1,915+ advocacy emails and letters sent to parliamentarians
196+ face to face meetings held with parliamentarians
485+ phone calls and text messages to parliamentarians
37 votes in favour of Maeve’s Law in the Senate
3,500+ hours of work by Mito Foundation staff
92 votes in favour of Maeve’s Law in the Lower House
60 medical, scientific and ethical expert signatures on an open letter of endorsement
1,100+ media articles reached over 28 million people in 2020 and 2021.
35,562+ tears of joy on 30 March 2022
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.