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.
Information for families
On 10 April 2022, the Federal government announced funding for the pilot stage (AU$15 million) and is seeking applications by 14 September 2022 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 will continue to work closely with the NHMRC during this time to ensure that the needs and priorities of the mito community are closely considered.
Download our Q&A document for comprehensive information on the next steps.
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 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 have bravely shared their personal stories, met with parliamentarians and made heartfelt submissions. Your courage and tenacity have made this milestone possible.
The Government will now move towards the implementation phase to enable eligible Australians to access mitochondrial donation under clinical trial conditions.
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.
Bethany sees the impact of mito as her sister lives with a type of mitochondrial disease called MERRF syndrome (Myoclonic Epilepsy with Ragged Red Fibres). Bethany hopes that with mitochondrial donation, she can have a family free of this horrible genetic condition.
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.
Rhonda was 32 years old when she learnt her family was living under the shadow of mito.
Pam was diagnosed with MELAS, a maternally inherited form of mito, in her mid-forties.