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Mito News

This page contains news items from 2018, 2017 and 2016. For older new items, please visit the news archive.

 

Participate in the First Mito Study of its Kind

AMDF is working with the International Centre for Community-Driven Research to understand the experience of mito patients and what they want from future treatment, care and support.


Calling Participants for Research Studies

Curtin University (WA), the University of Sydney (NSW) and the Sydney Children’s Hospital at Westmead (NSW) invite the mito community to participate in research studies.


Update on Stealth BioTherapeutics Australian Trial

16 February 2018 Stealth BioTherapeutics’ interventional study on Primary Mitochondrial Myopathy (PMM) treatment will no longer take place in Australia.

 


Review of WA laws could impact mito familiesfactsheet

25 January 2018 The WA Department of Health has invited AMDF to provide a submission into its independent review of the Western Australian Human Reproductive Technology Act 1991 (HRT Act).

 


Image of Pat CumminsAMDF Ambassador Selected for Ashes

AMDF Ambassador Pat Cummins will represent Australia in the first test of the Ashes.

 

 


AMDF Awards 2017

27 September 2017 Award recipients have been announced for this year’s AMDF Awards.

 


Patient Standards of Carefactsheet

16 August 2017 International standards of care have been established for patients with primary mitochondrial disease.

 


factsheetAMDF Biennial Services Survey Results

7 August 2017 The results from the 2017 AMDF Services Survey are now available.

 

 


Mito Warrior Mobile Game

4 August 2017 Mito Warrior is an outer space adventure game develop by Stealth BT to teach people about mitochondria and mitochondrial disease.

 


In Memory of Rose LingardIn Memory of Rose Lingard

With great sadness, AMDF learnt the news of the passing of Rose Lingard on Friday, 9 June 2017.

 

 


factsheetHow 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.

 


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.

 


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.


International Patient Forums

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


factsheet

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.


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’.

 


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.

 



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.

 



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.



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.


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.


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.


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.

 


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.


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.

 

 


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.


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.


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.

 


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.


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.  

 


 

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.



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.


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.

 


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.



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.