Resources

Resources: Table of Contents

 

  • Mito Resources
  • Patient Resources
  • Mito Information Day Resources
  • Stay in Bed Day Resources

For mitochondrial donation resources, please click here.

MITO RESOURCES

 

Mito Resources

 

A Compelling Case for Mito Diagnosis

This fact sheet is aimed at clinicians and highlights the many compelling reasons to diagnose mitochondrial disease (mito). Please download the pdf and share it with your medical professional.

Download (PDF format, 147KB)

 


 

Making Health and Medical Decisions

Everyone should have the freedom to make informed decisions about their healthcare.

This fact sheet discusses advocacy services which support decision making and help resolve issues with health, disability and other services. It also provides information about advance care planning and appointing a Power of Attorney.

Download (PDF format, 147KB)

 


 

Medical Identification and Alerts

This fact sheet provides information about medical identification jewelry and phone apps as well as personal emergency response services/personal alarm call systems.

Download (PDF format, 147KB)

 


The Mitochondrial Disease Report

The Mitochondrial Disease Report: Progress Towards Overcoming Life’s Energy Crisis

The Mitochondrial Disease Report: Progress Towards Overcoming Life’s Energy Crisis report was compiled by the AMDF to provide an overview of the current state of play regarding mitochondrial disease. With contributions from Australia’s leading scientists and clinicians, patients and members of the AMDF, the report is intended to start conversations about mitochondrial disease.

Download (PDF format, 4MB)

 


AMDF Flyer

The AMDF general flyer which details the work the Foundation is involved in, as well as information on mitochondrial disease and its prevalence.

Download (PDF format, 1.79MB)

 

 

 


mito-childrens-book-thumb

A Little Book About Mito

Written and illustrated by long-time AMDF supporter Martine Vanderspuy with the help of Dean Crawley, A Little Book About Mito is a delightfully simple story to explain mitochondrial disease (Mito). This book has proven one of the most sought after resources from the patient and carer community. While intended for children, many adults have found this booklet most useful in coming to terms with the complexity of mitochondrial disease through the use of simple, concise language.

Download (PDF format, 1.2MB)


mito-fact-sheet-thumb

Mitochondrial Disease Fact Sheet

Developed by the AMDF to help provide the facts about mitochondrial disease, the fact sheet is regularly updated as more information comes to hand. A must have resource to help understand mitochondrial disease.

Download (PDF format, 130KB)

 


gp-booklet-thumb

Medical Information Booklet for General Practitioners

Written by Dr. Karen Crawley, this booklet provides more in-depth information about mitochondrial disease and is intended as a resource for Medical Practitioners who may not have dealt with mitochondrial disease before.

Download (PDF format, 1.8MB)

 


how-to-treat-mito-thumb

Australian Doctor – How to Treat Mitochondrial Disease

Targeted at General Practitioners and featured in the Australian Doctor publication, this in depth article covers the pathogenesis, clinical assessment and management of patients with mitochondrial disease. The article also includes case studies and a ‘How to Treat’ quiz to test your knowledge.

Download (PDF format, 350KB)

 


Living Well With Mitochondrial Disease: living-well-with-mito-thumbA Handbook for Patients, Parents and Families.

Written by Christy Balcells, Executive Director of MitoAction, Living Well With Mitochondrial Disease helps makes sense of mitochondrial disease (Mito). Writing as a parent of a child with Mito and a trained nurse, the author shows adult patients, parents, family members and carers how to achieve the best quality of life possible. Read more here.

 


wild-snail-thumb

The Sound of a Wild Snail Eating

Elisabeth Tova Bailey tells the inspiring and intimate story of her uncommon encounter with a Neohelix albolabris – a common forest snail. While an illness (mitochondrial disease) keeps her bedridden, Bailey watches as the snail takes up residence on her nightstand. She discovers the solace and sense of wonder that this mysterious creature brings and comes to a greater understanding of the interconnections between species and her own human place in the natural world. Read more

 


interview-tips-thumb

Media Interview Tips

A useful resource of tips and key messages to use when being interviewed by the media.

Download (PDF format, 149KB)

 

 

 


PATIENT RESOURCES

 

National

lifeline-logo-onwhiteLifeLine

If you are thinking about suicide or experiencing a personal crisis help is available. No one needs to face their problems alone.

PH: 13 11 14 (24 hours a day)


GriefLine

GriefLine is Australia’s only dedicated grief helpline service that provides counselling support services free of charge to individuals and families. These include: telephone support; online counselling; in-house one on one counselling; education and training and health support programs.

Callers to the GriefLine Helplines have the opportunity to share their stories anonymously and confidentially with someone who will listen.

PH: (03) 9935 7400 (Metro Melbourne) 1300 845 745 (Australia wide)


 

Genetic and Rare Diseases Network (GaRDN) The Advocate Issue 5 2015

This issue of the GaRDN newsletter contains important information on direct-to-consumer (DTC) genetic tests.

Download (PDF format, 6,810KB)

 

 


Ronald McDonald House Charities

An overview of the support and services offered by Ronald McDonald House Charities.

Download (PDF format,  347KB)


Australian Disability Parking Scheme

Information and contacts for obtaining a Mobility Parking Permit.

Download (PDF format, 314KB)

 


MyTime logoMyTime

MyTime groups provide support for mothers, fathers, grandparents and anyone caring for a child with a disability or chronic medical condition.

 

 


continence logo

Continence Foundation of Australia

The mission of the Continence Foundation of Australia is to represent the interests of Australians affected by, or at risk of, bladder and bowel control problems and act as an advocate for their interests.

Call the National Continence Helpline on 1800 33 00 66


I-am-AbleI Am Able

I am able allows customers to choose from a range of services and develop a package to reflect your interests. Supports include daily personal activities, daily living and life skills development and community, social and civic participation. I am able are registered to provide supports for NDIS participants.


familyplanning

All About Sex

All About Sex is a series of fact sheets for people with intellectual disability and the people who support them. The fact sheets cover a range of topics including bodies, relationships, sex, pregnancy and reproduction, sexual health and sexual assault.

 

 

 

New South Wales

 

SW Sydney Service Directory for People with Disabilities

Facilities available for people living with disabilities in the Bankstown, Fairfield, Liverpool area.

Download (PDF format, 195KB)

 


Community Care Access Point – Hunter Region

Access point for community services in the Hunter reigon

Download (PDF format, 894KB)

 


South East Sydney and Illawarra Area Health – Directory of Child, Youth and Family Services

Services available to children, youth, and families in the SESIAHS area

Download (PDF format, 3.64MB)


Assisted School Travel Program – NSW Public Schools

Fact Sheet for parents on the Assisted School Travel Program

Download (PDF format,150KB)


Pre-school Disability Support Program – NSW Schools

Support for the inclusion of children with disabilities into NSW community pre-schools.

Download (PDF format, 53.0KB)


Younger Onset Dementia Program – Streeton Cottage, HammondCare

Overview of residential services available for younger people with dementia.

Download (PDF format, 390KB)


Implementing the ‘Living Life My Way’ Framework

Information on the National Disability Insurance Scheme for patients.

Download (PDF format, 116KB)


knc_volunteer_home_visitors_2x-1

Katoomba Neighbourhood Centre

The Katoomba Neighbourhood Centre offer many services aimed at people with a disability such as the Blue Mountains home modification and maintenance service, Katoomba volunteer home visitors and the Community Visitors Scheme.

 


Penrith Disabilities Resource Centrepdrc_office

Penrith Disabilities Resource Centre Inc is funded by the  Ageing, Disability and Home Care, Department of Human Services, to resource and support people with disabilities who live, work in, and/or utilise services based in the Penrith Local Government Area and/or surrounding areas. The service caters for the needs of people with all types of disabilities.

 


hecis

Hawkesbury Early  Childhood Intervention Service

Hawkesbury Early Childhood Intervention Service offers special education services including speech, language and educational assessments and suggestions for individualised programs. They also provide advice and support to parents and carers.

 


Ability-Links-logo_260e4Ability Links NSW

Ability Links NSW works with people with disability to help them plan for their future, build on their strengths and skills, and develop networks in their own communities so they can do what they want with their lives – outside of the traditional disability service system.

 

 

Victoria

 

Through the Maze

An overview of services and support for parents of children with a disability in Victoria.

Download (PDF format, 963KB)

 

 


INFORMATION DAY RESOURCES

 

Please note: The slides provided were designed to compliment the presentations given on the day. Therefore, certain aspects may not always translate away from the oral presentation.

Brisbane Mito Information Day - 18 November 2016

Anita Inwood, metabolic nurse practitioner – Transition to Adult Care

Download (PDF format, 697 KB)

Louise Healy, MindU Services – Mindfulness Tools for Resilience

Download (PDF format, 1 MB)

Catherine Bonifant, Clinical Specialist Dietitian – Nutritional Interventions in Mitochondrial Disorders

Download (PDF format, 1 MB)

Perth Mito Information Day - 11 November 2016

Shannen Stanes, Therapy Focus – Mitochondrial Disease and Exercise

Download (PDF format, 572 KB)

National Disability Insurance Agency – The NDIS

Download (PDF format, 825 KB)

Brisbane Mito Information Day - 16 May 2015

Dr Karen Crawley – Australian Mitochondrial Disease Foundation

Download (PDF format, 552 KB)

Professor John Christodoulou – Western Sydney Genetics Program, Westmead Children’s Hospital

Download (PDF format, 1.31MB)

Sean Murray – Australian Mitochondrial Disease Foundation

Download (PDF format, 2.83MB)

Melbourne Mito Information Day - 15 November 2014

Professor David Thorburn – Murdoch Childrens Research Institute

Download (PDF format, 1.94MB)

Dr Matthew McKenzie – MIMR-PHI Institute of Medical Research

Download (PDF format, 1.73MB)

Ms Keri Pereira – Genetic Support Network of Victoria

Download (PDF format, 7.43MB)

Mr Sean Murray – Australian Mitochondrial Disease Foundation

Download (PDF format, 7.43MB)

Sydney Mito Information Day - 7 August 2014

Dr Natasha Gerbis – Kolling Institute of Medical Research

Download (PPT format, 1.96MB)

Ms Monique Covey – NSW Health – Northern Sydney Local Health District

Download (PPT format, 6.75MB)

Mr Sean Murray – Australian Mitochondrial Disease Foundation

Download (PPT format, 6.44MB)

 

 


STAY IN BED DAY RESOURCES

Stay in Bed Day 2015

mito-fact-sheet-thumbMitochondrial Disease Fact Sheet

Developed by the AMDF to help provide the facts about mitochondrial disease, the fact sheet is regularly updated as more information comes to hand. A must have resource to help understand mitochondrial disease.

Download (PDF format, 130KB)

 


Stay in Bed Day Season Media Release

Download (PDF format)

 

 


 

Want to approach your local media about having them publish your story?  Please email communications@amdf.org.au