LEUKODYSTROPHY RESOURCE & RESEARCH ORG INC (LRRO)

LEUKODYSTROPHY RESOURCE & RESEARCH ORG INC (LRRO)

A Not-For-Profit Organisation Supporting All Leukodystrophy Families

ABOUT US

Our Mission

The mission is to maximize Health Care Resources, advance the world’s leading Research.

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Leukodystrophy Resource and Research Organisation Australasian Leukodystrophy Foundation

Our Story

Our story starts with Brendan Wyborn who was diagnosed with Adrenoleukodystrophy (ALD).

What is Leukodystrophy?

The term Leukodystrophy  refers to a group of genetic disorders that are characterised by the imperfect growth, development or maintenance of the white matter which is known as myelin.

Types of Leukodystrophy

There are some 52 plus forms that come under the banner of a Leukodystrophy. Information on some of the types of Leukodystrophy can be found below.

How to Fight?

The battle to conquer Leukodystrophy consists of employing many weapons. Chief among these is awareness.

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NEWS

Seventh Newsletter

To state the blatantly obvious the vast majority of us are living in a time that has never been experienced before. Not since World War…
Leukodystrophy Resource and Research Organisation Australasian Leukodystrophy Foundation

Adrenal Crisis Advice

In this time of transition with the Coronavirus or COVID-19 creating changes in our lives it is most important for all of those who have…

Ann Moser Award

ALD Connect announced the new “Ann B. Moser ALD Community Award”, an honour which recognizes unusually impactful contributions to the ALD community at-large or major milestones…

It can truly be said that Leukodystrophy is a “Family” disorder because it is inherited genetically and therefore involves the entire family…

My daughter Armani was diagnosed with metachromatic Leukodystrophy at age 4.5 in February 2018 on Diagnosis we were told there was nothing


Register for membership. Your membership will help us to cure Leukodystrophy.


Leukodystrophy

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WHAT PEOPLE SAY

See what people think about our organisation

This was such an incredibly challenging and confusing time and one where Bobwas of great comfort and support. He messaged us following a post I put on aLeukodystrophy Facebook group asking for people in NZ or Australia who maybe able to help us. Bob reached out and helped us make sense of theinformation we were getting from hospital and shared his own personal storyso we could begin to think about what the future may be for Walter. Bob cameto NZ for a conference and took time to meet us, listen to our concerns andhelp link us up with the right professionals in order to get a diagnosis.His calls, messages and contacts were of much comfort and were trulyappreciated.

Emma Pickering

Emma Pickering

Through most of this journey, Bob has been by my side, helping me accesshelp and advice from doctors who specialized in Leukodystrophies but we lostcontact for a while when I moved back to Sydney. Bob is a verykind-heart, generous man and has been a source of support and comfort formany parents and family of children with Leukodystrophies.

Margaret E Bright

Margaret E Bright

At age 48 I commenced having stroke like symptoms. After a brain MRI in 2016 diagnosed me with Adult Onset Leukodystrophy. A shock to me and my partner followed by discovery of this rare disease that was challenging me in everyday tasks. I reached out to Bob Wyborn from LRRO whom guided me with his knowledge and also provided medical contacts that could assist in my journey. I guess I’m one of the lucky ones as although I do struggle with some day to day tasks, I continue to work full time and enjoying life.  This disease won’t beat me!!

Nelia De Caires

Nelia De Caires