Information & Support

Useful Links

Below is a brief list of links we have found useful.  If you would like to add to the list, please email info@leuko.org.au  If you are searching the internet for information, ask your doctor or genetic counsellor for suggestions about good sites relevant to your circumstances, so you are not wasting your time with inaccurate and often alarming information. 

ASSISTIVE TECHNOLOGY 

As well as supplier contact details can be found on the ILC Australia website
www.ilcaustralia.org.au   

For further information please contact Yooralla head office – (03) 9666 4500 or yooralla@yooralla.com.au 

BOOKS 

Because She Can (includes Enza Dilettoso story and 29 other stories of unique Melbourne women by Marina Brbot)
http://marinabrbotbook.com

Cracking The Code (Stephen and Sally Damiani with Leah Kaminski)
http://www.missionmassimo.com/cracking-the-code/ 

Loie’s Disease – a children’s book about Leukodystrophy (and other publications by Maria Kefalas)
https://www.thecalliopejoyfoundation.org/store 

Sr Julie Thomas CSB OAM Biography 2016 link from old website, pdf also uploaded
https://6e562684-6112-462c-8ccf-b164041c3573.filesusr.com/ugd/97962c_e8ddedd6ae33489c98bf9acd3dc2b5fa.pdf 

A Parent’s Guide – A Guide to Living with ALD (Leukodystrophy)

CAREGIVERS

https://adrenoleukodystrophynews.com/2020/02/13/tips-for-taking-care-of-adrenoleukodystrophy-caregivers/?fbclid=IwAR35DOiLT5TMl5lFDQY2kTQapbfmJ0h0JHnZ9qH2znq6wQ8EGO9U1lF0GGo 

Find a range of support, from in-home personal care to support at work or in the community. The support you receive is entirely up to you and is most effective when you get creative. Think about what you want to achieve and the skills you want to develop, and how a worker can support you to do that. Are you looking for a social coach? Workplace mentor? Swimming teacher? Study buddy? Match with support workers who meet your needs and share your interests.
https://hireup.com.au/become-a-client/ 

Carer Gateway

https://www.carergateway.gov.au/ 

https://youtu.be/ClX-MaLlXCY 

GENETICS/GENOMICS 


Australian Genomics Health Alliance

Integrating Genomics into Healthcare 

Program Co-ordinator Mackenzie’s Mission & Massimo’s Mission 

https://www.australiangenomics.org.au/ 

https://www.australiangenomics.org.au/massimos-mission-closing-the-loop-from-genetic-diagnosis-to-clinical-treatment-of-leukodystrophies/  

https://www.australiangenomics.org.au/category/news/ 

Genetic Health Queensland

https://metronorth.health.qld.gov.au/rbwh/genetic-health-queensland 

 

Global Leukodystrophy Initiative (GLIA)

https://theglia.org 

 

Illumina 

Sequencing and array-based solutions for analysis of genetic variation and function. 

https://www.illumina.com/ 

https://sapac.illumina.com/content/dam/illumina-marketing/documents/company/corporate-citizenship/illumina-global-advocacy.pdf 

 

Melbourne Genomics

Melbourne Genomics’ Education team has produced an interactive infographic on the genomic sequencing process – highlighting the types of tests available, pre- and post-test guidance and including downloadable learning resources for health professionals.  You may wish to pass this to your GP.  This free online resource is now live and available for health professionals.  You may wish to pass on to your GP.
www.melbournegenomics.org.au/professionals/learning 

 

NSW Health Centre for Genetics Education

https://www.genetics.edu.au/ 

 

NSW Health Clinical Genetics

https://www.nslhd.health.nsw.gov.au/Services/Directory/Pages/ClinicalGenetics.aspx 

 

The Genetic Link

https://www.thegeneticlink.org.au/about-us/
Assisting individuals and families with the ‘human’, non clinical side of genetic diagnosis is common place in our day to day activity:  assisting in access to services, connecting with others, education, advocacy, support and information. 

 

GUARDIANSHIP

ACT

https://www.ptg.act.gov.au/guardianship

 

Northern Territory

https://nt.gov.au/law/processes/adult-guardianship-and-orders

 

NSW 

Guardianship Division (Contact differs between States and Territories)

NCAT’s Guardianship Division makes decisions about people who have a decision-making disability. 

The Guardianship Division determines applications about adults who are incapable of making their own decisions and who may require a legally appointed substitute decision maker. 

Guardianship and Financial management are different, for more information refer to: 

Territories 

NSW 

https://www.ncat.nsw.gov.au/Pages/about_us/about_us.aspx 

QLD 

https://www.qcat.qld.gov.au/matter-types/guardianship-for-adults-matters 

SA 

http://www.sacat.sa.gov.au/search?q=guardianship

Tasmania

https://www.guardianship.tas.gov.au 

WA 

https://www.publicadvocate.wa.gov.au/G/guardianship.aspx 

Power of Attorney

You would use a general power of attorney to appoint someone to make financial decisions on your behalf for a specific period or event, such as if you’re going overseas and need someone to sell your house or pay your bills. 

It’s used while you can still make your own decisions and ends once you no longer can (i.e. you lose capacity) you may move to Enduring Power of Attorney. 

Can be managed by a solicitor or refer to the link below.
https://www.australia.gov.au/information-and-services/family-and-community/wills-and-powers-of-attorney/powers-of-attorney 

Enduring Power of Attorney

An enduring power of attorney is a legal agreement that enables a person to appoint a trusted person – or people – to make financial and/or property decisions on their behalf and only commences when you lose capacity to make these decisions.. An enduring power of attorney is an agreement made by choice that can be executed by anyone over the age of 18, who has full legal capacity. 

Can be managed by a solicitor or
https://www.australia.gov.au/information-and-services/family-and-community/wills-and-powers-of-attorney/powers-of-attorney

Will

A will is a legal document which comes into force after your death. The document clearly sets out your wishes for the distribution of your assets after your death. Everyone 18 and over who has the mental capacity to make a Will should do so. If you die without a Will you are said to die intestate and legalities become complex. 

Can be managed by a solicitor or refer to the link below.
https://www.australia.gov.au/information-and-services/family-and-community/wills-and-powers-of-attorney/powers-of-attorney

Advanced Care Directive

This document advises healthcare treatments you would like to have or refuse, should you be in a position where you are seriously ill or injured and unable to make or communicate. It is about Advanced Care Planning and can only be made by an adult with decision making capacity. 

For more information to each state refer to:
http://www.advancecareplanning.org.au/resources/advance-care-planning-for-your-state-territory#/ 

Recognition of interstate powers

Comparative table may be viewed on the following:
https://www.bylawyers.com.au 

HOUSING 

Appropriate housing is one of the many unmet needs for our clients and others living with a disability. I 

Our Family Advocate has researched some websites of assistance to those who wish to explore housing options. It is always best to gain accurate and updated information from the housing providers themselves, though we are here to assist where we can. 

 

Clients over 65 years of age

An Aged Care assessment is organized by an Aged Care Assessment Team (ACAT, or ACAS in Victoria) and is required for a person who needs to be approved for Government-funded services including; an aged care facility, home care, transition care or respite. Several aged care homes no longer provide respite (If you require respite then call individual facilities to find out if they provide respite).
https://www.myagedcare.gov.au/eligibility-and-assessment/acat-assessments 

 

Rural and remote

For those living in rural and remote areas, appropriate housing and home care services are limited and families often don’t have wide choices with which service providers, housing options or Aged Care facilities they may access. Families often have no choice but to travel long distances to visit their loved ones. This places a huge strain on families and it often helps if the facilities have family gatherings so families may build rapport with staff and other residents’ families. These peer support networks often provide families with some peace of mind knowing their loved one is being supported by other caring people.  

 

Deciding on housing

When exploring housing options, try to make the time to visit the house or facility several times to gain some insight into the culture, environment, staff and the care provided. It is not only the aesthetics of the building you should be considering, it is the care offered to your loved one, the quality of the food, daily menu, access to your or other medical officers, the provision of internal or external allied health and palliative health care professionals, internal and external social activities. As a previous RN in charge of community housing and residential care facilities, I have always encouraged people to chat with other family members and residents and ask questions. Staff are often willing to answer questions and if they don’t know they should be directing you to someone who does, such as the house or facility manager.  

In September 2018, Prime Minister Scott Morrison announced a Royal Commission into Aged Care. You will be pleased to know that young people in Residential Aged Care facilities and the issues related to this cohort are a high and early priority for the Royal Commission.  

The NDIS may be able to provide extra assistance to scheme participants, such as a Local Area Coordinator to make contact and discuss a person’s needs with housing providers, and funded support co-ordination to assist sourcing appropriate housing options.  

NDIS housing information

https://www.ndis.gov.au/participants/housing-and-ndis
For those clients 65 years and under wishing to access an Aged Care facility, NDIS is the initial provider to contact. 

 

Young people entering Aged Care

https://agedcare.health.gov.au/programs/younger-people-in-aged-care/younger-people-entering-aged-care-new-entrants.
All providers I have had conversations with were generous with their time and pleasant to speak with so please do not hesitate to give them a call if you have any questions. 

Housing websites

National 

https://www.thehousinghub.org.au/ 

ACT 

https://www.nsw.gov.au/living-nsw/government-services/disability-services

Northern Territory 

https://nt.gov.au/wellbeing/disability-services

NSW

https://www.nsw.gov.au/living-nsw/government-services/disability-services

Queensland 

https://www.youngcare.com.au/what-we-do/housing/ 

Tasmania 

http://possability.com.au/services/accommodation/  

Victoria 

https://housing.vic.gov.au/ndis-contacts-and-help 

Western Australia

http://www.housing.wa.gov.au/currenttenants/publichousing/livingwithadisability 

https://www.summerfoundation.org.au/summer-foundation-connect-support-covid-19-response/

JOURNALS 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6698898/ 

https://www.clinicalkey.com.au/#!/content/playContent/1-s2.0-S0387760417300013?returnurl=https:%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS0387760417300013%3Fshowall%3Dtrue&referrer=https:%2F%2Fwww.ncbi.nlm.nih.gov%2F 

Abstracts for the 43rd Human Genetics Society of Australasia Annual Scientific Meeting 

Download here.

 

Adrenoleukodystrophy

Information platform to all aspects of Adrenoleukodystrophy and the world wide registry for ABCD1 mutations.
https://adrenoleukodystrophy.info/ 

Babies born with Adrenoleukodystrophy (ALD) are neurologically normal at birth. However, early diagnosis of boys with Adrenoleukodystrophy can lead to life-saving interventions.  
https://adrenoleukodystrophy.info/clinical-diagnosis/newborn-screening  

Use for inclusions such as Professionals and Leuko types, surveys.
https://www.alextlc.org/news/case-studies/ 

 

Elsevier 

Diagnosis, prognosis, and treatment of Leukodystrophies
https://www.elsevier.com/en-au 

Orphanet – The portal for rare diseases and orphan drugs

https://www.orpha.net/consor/cgi-bin/Disease_Classif.php?lng=EN&data_id=181&PatId=10495&search=Disease_Classif_Simple&new=1

If you download on Orphadata the rare neurological disease classification, you can search for all diseases linked to Leukodystrophy ORPHA:68356

United Leukodystrophy Foundation (ULF)

USA 

Works to establish a communication network among families; as well as increases public awareness and acts as an information source for health care providers by promoting and supporting research into causes, treatments, and prevention of the Leukodystrophies.  They also offer option for a second opinion.
http://ulf.org/ 

Massimo’s Mission Program and The Leukodystrophy Clinic

@ Murdoch Children’s Research Institute (MCRI)

More Information Here

Mission Massimo Foundation

https://www.missionmassimo.com/ 

Remember The Girls (X- linked carriers)

https://www.rememberthegirls.org/

Their mission is to raise awareness of the many issues facing female carriers of x-linked recessive genetic disorders; to provide a forum for x-linked females to share their stories, ask questions, provide and receive emotional support, and develop friendships; and to advocate for increased attention of the medical community to the physical and emotional issues of females who carry x-linked disorders.

NDIS 

www.ndis.gov.au

1800800110 

The National Disability Insurance Scheme (NDIS) provides funding for ‘reasonable and necessary’ supports which help people with a disability to: 

  • achieve their goals 
  • become more independent 
  • take part in social and community activities 
  • have the opportunity to enjoy an ordinary life. 

To receive support under the NDIS you must: 

  • be registered prior to your 65th birthday 
  • be an Australian citizen or a Permanent Resident or hold a Protected Special Category Visa 

Funding under the National Disability Insurance Scheme is decided through the National Disability Insurance Agency.  

For further information refer to:
https://www.valid.org.au/10-steps-excellent-ndis-therapy-reports

PALLIATIVE CARE

The Australian Centre for Grief and Bereavement

https://www.grief.org.au/ has recently launched a telehealth bereavement counselling service which gives people access to a qualified bereavement counsellor. This is an important resource at any time but especially now, when families may be unable to support one another or even spend time with their dying loved one.

Palliative Care Australia

https://palliativecare.org.au offers a range of resources to carers, patients and health professionals. There is a portal for each group to access specific resources, and plenty to download and access when necessary. This site has up to date information on care for people in palliative care during the COVID 19 pandemic.

RESPITE 

Bear Cottage NSW 

www.bearcottage.chw.edu.au 

Bear Cottage Sydney Children’s Hospitals Network is a very special place that’s dedicated to caring for children with life-limiting conditions and their families.
www.schn.health.nsw.gov.au/about/about-bear-cottage 

 

Hummingbird House QLD 

Hummingbird House is Queensland’s only children’s hospice. We provide short break stays, family support services, creative therapies, and care at the end of life, for children with life-limiting conditions and their families. Hummingbird House is a place where kids can be kids, families can reconnect, and precious memories can be created.
www.hummingbirdhouse.org.au 

 

Cara SA 

GetawaysFarm StayAdults’ Respite and Accommodation.  Cara will work with you to meet your choices under the NDIS.  Here’s what some of the current NDIS children and teens are using:  Home & Community Support, Kids Club, Camps for Kids, Children’s Respite, Specialist Services.
Find out more 08 8347 4588, 
https://www.cara.org.au/about_us 

Very Special Kids VIC 

Very Special Kids cares for children with life-threatening conditions by providing a children’s hospice and professional family support services. We help approximately 900 families across Victoria with ongoing support from diagnosis all the way through to recovery or bereavement.
https://www.vsk.org.au/ 

 

Hannah’s House WA 

https://www.hannahshouse.org.au/ 

 

Genetic and Rare Disease Network WA 

https://gardn.org.au/wp-content/uploads/2017/11/Respite-Care-Services.pdf 

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