News

MITO NEWS

 

This page contains news items from 2017 and 2016. For older new items, please visit the news archive.


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How does the Federal Budget impact the mito community?

Read AMDF’s position statement and summary of the Federal Budget, and how it will impact the mito community. Read more.


factsheetFunding announced for ‘Big Bear Cottage’

On 2 April NSW Premier Gladys Berejiklian and Minister for Health Brad Hazzard pledged two million dollars of funding to establish Big Bear Cottage – a hospice for 18 to 30 year olds. Read more.

 


AMDF-AGHA Genetic Testing Partnership

10 April 2017 AMDF is pleased to announce a new research opportunity for patients with suspected mitochondrial disease. The project aims to provide patients with a genetic diagnosis, and determine the most effective way to diagnose mito. Read more.


International Patient Forums

3 April 2017 A number of international patient forums are available to the Australian mito community in 2017. Read more.


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AMDF services survey

27 February 2017 AMDF is seeking feedback via an online survey, from people with a personal connection to mito to enable us to improve and expand on our services. The survey will take approximately 20 minutes, and your responses can remain anonymous. Click here to take the survey.



ProbonoLuca’s second birthday celebration

19 February 2017 On 19 February, The Essendon Royals Soccer Club hosted a party in celebration of Luca’s second birthday. Luca was diagnosed with mitochondrial disease when he was 10 months old. Read more.


AMDF welcomes the ACNC’s ‘Tick of Charity Registration’

3 January 2017 The Australian Mitochondrial Disease Foundation (AMDF) welcomes the introduction of the Australian Charities and Not-for-profits Commission (ACNC) ‘Tick of Charity Registration’. Read more.

 


AussieMit 2016

More than 100 researchers from seven countries attended 2016’s AussieMit conference. The conference featured presentations on mitochondrial donation, developments in medicine and drug trials, and more.

A Patient and Clinician Forum provided targeted information to mito patients.

Click here to read more.



AMDF Award Winners 2016

AMDF Award winners were announced at the annual AMDF Symposium on 22 September. The AMDF Awards thank individuals for their significant contribution to the mito community. Awards have been gifted to volunteers, donors, and researchers, as well as people who have been making a difference to the foundation and community as a whole since the AMDF began.

Click here for the 2016 list of winners.



Update: Khondrion clinical trial progress

24 October 2016 Mitochondrial research centre, Khondrion, has announced the completion of patient recruitment and first-in-patient dosing as part of Phase II of their KHENERGY clinical trials investigating the affect of small compounds on a genetic mutation associated with MELAS. Read more.



Continuation of Trials for Mitochondrial Disease

12 September 2016 Following positive results from initial testing, Stealth BioTherapeutics have announced the continuation of trials for evaluating elamipretide in primary mitochondrial disease. The study, MMPOWER-2, will be continued among the same group of patients who completed the previous study. Positive data from the trials will be used to develop Phase 3 of clinical trials. Click here for more information.


Khondrion clinical trial progress

12 September 2016 Dutch mitochondrial research centre, Khondrion, has announced the development of phase II clinical trials for adults and children suffering from a genetic mutation linked to MELAS. Read more.


Book launched for Global Mitochondrial Disease Awareness Week

12 September 2016 A children’s book in tribute to Kate Drury, who passed away from mitochondrial disease in 2015 will be released during Global Mitochondrial Disease Awareness Week. Read more.


Steve Waugh Foundation grant

30 August 2016 Individuals aged 0-25 years affected by very rare cases of mitochondrial disease may be eligible for a grant to cover medical expenses via a grant offered by The Steve Waugh Foundation. Read more


Genioz study into awareness of genetic science

30 August 2016 Australians aged 18 and over are invited to share their opinions on genetic science by completing a survey. The results will be used to define educational strategies and inform national policy for personal genomics. The survey is part of the Genioz study, a study into personal genomics conducted by leading researchers in Australia. Read more.

 


Parenting a child with a rare disease: parent mental health and well-being

24 August 2016 Parents of a child/children aged 6 to 18 with a rare disease, such as mito, are invited to take part in a research project that aims to explore parenting experiences of people who have a child with a rare disease.  The results will be used to develop a framework to better represent the experiences of parents. It will also increase awareness of the importance of parent mental health. Read more.


Positive Results for Mito Trial

20 June 2016 Stealth BioTherapeutics has announced positive results from MMPOWER, a Phase-2 clinical trial of Elamipretide for mitochondrial myopathy patients. Read more.

 

 


Breaking news for mitochondrial donation

19 June 2016 A recent article published in Nature has found that using a technique called early pronuclear transfer will greatly reduce the amount of faulty mitochondria in an embryo. Read more.


Team Mito Guinness World Record Attempt

14 April 2016 Perth ultra runner Bernadette Benson is attempting to break the world record for the greatest distance run on a treadmill in 12 hours, to raise funds and awareness of mitochondrial disease. Read more.


Avalon Quilters

14 April 2016 Nearly 500 people attended the NSW Avalon Quilters exhibition in early March. For the last 32 years they have met on Thursdays to pursue their love of quilting. They have stitched hundreds of quilts during this time, some of which were on display. Read more.

 


NDIS Survey

12 April 2016 The National Disability Insurance Agency (NDIA) is conducting a survey on their communications and engagement with the community. You are invited to provide your feedback and go into the running to win 1 of 5 iPads. All responses will remain confidential and anonymous. Read more.


Disease manifestation and quality of life for mito patients

30 March 2016 A recent longitudinal observational study in the Netherlands has found that mitochondrial disease impairs the quality of life experienced by patients.  Read more.


 

Update on the progress towards treatments

21 March 2016 A new article, co-authored by leading mitochondrial researcher Professor Jan Smeitink, provides an overview of the current mechanisms for diagnosis of mutations in the nuclear DNA of mitochondria, with a particular emphasis on mitochondrial complex I deficiency. Read more.



Support AMDF and win a car!

15 February 2016  Can you imagine driving a brand new Lexus IS350 Luxury and helping the mito community in the process? It could be yours! Simply buy a raffle ticket in the annual ASX Thomson Reuters Charity Foundation raffle, and you’ll also be helping us find a cure and supporting people suffering from this devastating disease. Read more.


Recommendation for mito donation in US

4 February 2016  A committee from the Institute of Medicine has concluded, “that it is ethically permissible to conduct clinical investigations of MRT subject to certain conditions and principles” . The report was produced at the request of the US Food and Drug Administration. Read more.

 


AMDF Services Initiatives

14 January 2016  AMDF is committed to increasing its range of support services available to the mitochondrial disease (mito) community. In 2015 we conducted a Services Survey to gather feedback on the existing patient services and to find out what more patients and their families need. Read more.



Top 10 mitochondrial disease articles of 2015

11 January 2016  A piece released by Mitochondrial Disease News late last year has chronicled the top ten mitochondrial disease (mito) articles of 2015. These articles highlight the research and innovation that took place over the year and the implications for mito patients, their families and loved ones. Read more.