Senate Committee recommends laws change so Australian babies don’t suffer mitochondrial disease

Australian women at risk of having babies suffering severe mitochondrial disease may soon be able to have healthy children, following last night’s Senate Community Affairs References Committee recommendation to move towards legalising mitochondrial donation, a ground-breaking IVF technique that replaces energy-generating DNA in the mother’s egg with donor material.

The Committee’s report has been welcomed by the Australian Mitochondrial Disease Foundation (AMDF), the peak body supporting Australians with mitochondrial disease, a serious and potentially fatal genetic disorder that starves the body’s major organs of energy.

AMDF Chairman Dr Doug Lingard thanked the Senators for their hard work inquiring into mitochondrial donation, and called on the Australian Government to act on the Committee’s recommendations as soon as possible.

“At least 60 Australian babies each year could be prevented from suffering severely disabling and potentially fatal forms of mitochondrial disease if mitochondrial donation was available here. It offers the first practical hope for future generations to live free of maternally inherited mitochondrial disease,” Dr Lingard said.

“In the AMDF’s experience engaging with the Australian public, politicians and other stakeholders, including a Citizens’ Jury in 2017, mitochondrial donation receives overwhelming support when people understand the procedure and its ramifications.”

“By acting promptly to change our laws, Australia could become the second country in the world to establish a regulated system to provide mitochondrial donation to families affected by this devastating disease,” Dr Lingard said.

“After ten years of scientific research, ethical review and consultation, in 2015 the UK made pioneering legislative changes to allow mitochondrial donation; these were endorsed in 2016 by the Human Fertilisation and Embryology Authority, and the first clinic and patient licences were issued in 2017.

“The Committee clearly recognises that the UK’s strict regulatory system for mitochondrial donation provides a sound basis for Australia, with only minor changes likely to be required to reflect our local context.

“The AMDF supports the pathway towards legislation recommended by the Committee.

“We stand ready to help in the public consultation process and urge the Australian Government to seek the advice of the National Health and Medical Research Council as soon as possible,” Dr Lingard said.

 

Background

Mitochondrial donation involves replacing the faulty mitochondrial DNA in the mother’s egg (0.1% of its genetic material) with healthy donor mitochondrial DNA so the resulting baby will not suffer mitochondrial disease.

The mother’s and father’s nuclear DNA contributes more than 20,000 genes or 99.9 per cent of the baby’s genetic make-up and determines its appearance, intelligence, behaviour and other personal characteristics. The 0.1 per cent contribution (37 genes) from the donor egg means the resulting baby’s cells can effectively convert food and oxygen into the energy needed to power its organs.

Depending on which parts of their bodies are most affected and to what extent, people with mitochondrial disease can lose their sight or hearing, be unable to walk, eat or talk normally, have strokes or seizures, develop liver disease or diabetes, suffer cardiac, respiratory or digestive problems, or experience developmental delays or intellectual disability.

 

For interviews with the AMDF, experts and affected families, please contact:

Carol Moore, Moore Public Relations

02 9560 2826, 0402 382 363, This email address is being protected from spambots. You need JavaScript enabled to view it.  

 

For further media information:

·         AMDF Media Resources Dropbox: https://tinyurl.com/AMDFmedia

·         Senate Standing Committee on Community Affairs Science of mitochondrial donation and related matters https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/MitochondrialDonation

·         Scimex Expert Background Briefing: https://www.scimex.org/newsfeed/background-briefing-senate-to-report-on-allowing-three-person-ivf-to-treat-mitochondrial-disease  

           A recording of the 15 June briefing is in the Attachments at the bottom of the page, featuring:

-       Professor Carolyn Sue: Professor and Director of Mitochondrial Research, Royal North Shore Hospital, Kolling Institute, University of Sydney; Founding Director, Australian Mitochondrial Disease Foundation; Co-Chair, AMDF Scientific & Medical Advisory Panel.

-       Professor David Thorburn: Head, Mitochondrial Research Group, Murdoch Childrens Research Institute; Co-Chair, AMDF Scientific & Medical Advisory Panel

-       Dr Ainsley Newson: Associate Professor of Bioethics and Deputy Director, Sydney Health Ethics, The University of Sydney

 

PLEASE FIND BELOW A PRESS RELEASE BY THE WELLCOME CENTRE FOR MITOCHONDRIAL RESEARCH AT NEWCASTLE UNIVERSITY

 

Within the Wellcome Centre for Mitochondrial research at Newcastle University we are always searching for new and innovative ways to improve the lives of patients with mitochondrial disease. These innovations can take various forms, such as the development of new technologies  and finding new ways to connect and engage.

 

In the past we have found that the best ideas often come from people with direct personal experience of mitochondrial disease. To this end, we came up with the idea of holding meetings involving patients, researchers and technology designers to come up with ideas. Working with Open lab, also based at Newcastle University, and patient groups, we put together the  MYTO design events.

 

The MYTO events were a series of design events held in the UK, Netherlands and Italy in March and April 2018 bringing together people living with mitochondrial disease, technology designers and researchers. These events resulted in the generation of new ideas to help patients with mitochondrial disease. To view or comment on ideas please see the event webpage at https://myto.ideaboard.co.uk/ alternatively please follow us on twitter at @designingmyto

 

The success of this project was dependent on the co-operation and help of mitochondrial patient organisations, including the International Mitochondrial Patient (IMP) organisation, The Lily Foundation (UK), Spierziekten Nederland (NL), VKS (NL) and Mitocon (IT), who helped us to organise and run the MyTo events across Europe. We would like to say a huge thank you to all the patient organisations and the patients who gave up their time to help make this event a success.

 

Thank You!

                                                                          

 

 

Watch and share this amazing video of Talia and her inspiring parents! The whole world should know her!

https://www.facebook.com/pg/EnergyForLifeSpain/videoTalia

https://www.youtube.com/videoTalia

 

We are pleased to announce that a new member has knocked on IMP's door. Welcome to MitoAction from the United States!

MitoAction is a very active patient advocacy group in the United States. They have a very informative website and undertake many events and activities to support and inform mitochondrial patients and their families. Have a look at their website: www.mitoaction.org

They will find a good connection with our other memberorganisations which organise similar events and activities in their own countries. Sharing knowledge and expertience about this and inspiring each other is one of IMP's goals. 

Raising awareness about mitochondrial disease is another goal which becomes stronger if more patient groups join this on a global scale. One of the reasons why MitoAction approached IMP and why IMP is so enthusiastic about their membership.

The IMP network is growing stronger, not only in the world of patients and their families, but also in the world of research and the clinicians, and in the pharmaceutical world. This network is of the essence in jointly fighting against this terrible disease and stimulating the search for a cure.

We are looking forward to working together with MitoAction!

Rare Disease Poster and other materials can be downloaded now!

28 February 2018 will be the eleventh international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.

For the poster and other materials you can go to https://www.rarediseaseday.org  Here is where you can also find all other info, such as planned events per country.

The 2018 Rare Disease Day will include a social media campaign  #ShowYourRare where you can show your support for people living with a rare disease.

Meet Yara, the face of the poster, who features in the 2018 video and is involved in rare disease research. Research is this year's theme thanks to its important role in the rare disease cause!

Share the poster with all your friends and family. Spread the word about this important day!

 

© 2018 Int. Mito Patients