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Mito News

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

 

4 Reasons to Join the Mito Registry


15 May 2018 Why you should join the Mito Registry, if you have been diagnosed with or are suspected to have mitochondrial disease (mito).

 


The Bloody Long Trek is Back!


10 May 2018 Trek the Great Wall of China to cure mitochondrial disease (mito) – register now! 

 


AussieMit 2018 Registrations Now Open


2 May 2018 Register now for Australia’s most important conference into mitochondrial research! 

 


AMDF Launches School Education Program

30 Article 2018 AMDF has launched Mito 4 Kids, a school education program about mitochondrial disease (mito) for children in years K-6.

 


New AMDF Funded Projects


26 April 2018 AMDF has approved funding for four new exciting projects into areas such as genetic testing, standards of care, whole genome sequencing and Sengers syndrome.

 


Participate in the First Mito Study of its Kind


18 April 2018 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


16 April 2018 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.

 


AMDF Position Statement: Use of Genetic Information by Life Insurers in Australia


April 2018 Read AMDF’s position on the use of genetic information by life insurers in Australia, in light of the recent Parliamentary Inquiry into the life insurance industry (March 2018).


Changes to the AMDF Board


28 February 2018 AMDF thanks Dave Cleary for representing WA on the AMDF Board since 2014 and warmly welcomes new representative Fiona Elmer and alternate Dan Loden.

 


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 Families


25 January 2018factsheet 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).

 


AMDF Ambassador Selected for Ashes


Image of Pat CumminsAMDF 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 Care


factsheet16 August 2017 International standards of care have been established for patients with primary mitochondrial disease.

 

 


AMDF Biennial Services Survey Results


factsheet7 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 Lingard


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

 

 


How does the Federal Budget Impact the Mito Community?


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

 

 


Funding Announced for ‘Big Bear Cottage’


factsheetOn 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.

 

 


AMDF Services Survey


factsheet27 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.

 


Luca’s Second Birthday Celebration


Probono19 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 ACNCS’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’.