Australasian Leukodystrophy Foundation | Incorporated No. IA41033



  • For New Born Screening information check out this link It has some really important information that should be explored.
  • Women with ALD webinar recording is now available. Click here to view it.
  • Coping with Grief. This may be of help to all families going through their grief despite what condition their loved ones may be in.
  • has been launched. This is a collaborative effort of industry and ALD advocacy organisations that highlights the connection between Addisons disease, ALD, and AMN. You can request a test that might save a life. Click here to go to the site and to access the Red Flag!
  • bluebird bio Reports Interim Clinical Data from Starbeam Study. Click here to read the full report.
  • Webinar: Bone Marrow Transplantation for ALD. Presented by Troy Lund, MD, PhD. Thursday, May 19th 5-6 pm EST (in the Northern hemisphere – you will need to check your local time). Click  here for more information.
  • In honour of Mother’s Day being in May, the first ALD Connect’s Breakout Call will be for ALD Mums – May 17 between 6-7 pm EST (in the Northern hemisphere – you will need to check your local time). Topic for the call: How did you become an ALD Mum? Click here to read more and how to register.
  • Upcoming Webinar: Women with ALD. Presented by Marc Engelen, MD, PhD. Click here to read more and to register.
  • Bob Wyborn was at a conference on Leukodystrophy organised by the Kennedy Krieger Institute recently. GLIA have put the recorded videos on their website for general viewing. You can view them here.


Recent Posts


Family stories
and support



Research information
and resources



You are likely entering this site because you have received some very unpleasant news about a family member or a friend or you are seeking some personal knowledge about the group of disorders known as the Leukodystrophies.
We greet you as an organisation that has personal understanding and experience of having had an immediate loved one with a Leukodystrophy.

As you explore this site, it is our intention that you find accurate information that you need; be comforted by the support that other families can offer to you and your family and be encouraged by our globally recognised research programs, resources and family support that we will deliver to you.

We are in partnership with the leading Leukodystrophy scientific, medical and support authorities around the world and we offer to you the benefit of this powerful knowledge. In doing so, we also extend to you a comforting hand as you continue your walk with Leukodystrophy.

Leukodystrophy Defined

Leukodystrophy is a disorder determined by the following criteria:

  1. It is genetic
  2. It has a progressive nature
  3. It predominately affects the white matter (myelin) in the central nervous system (CNS) and peripheral nervous system (PNS)
  4. The myelin fails to develop or is destroyed by the dysfunction of a protein or enzyme

It results in devastating symptoms that lead to a dramatically shortened lifespan.

This website is continually being updated and is in the process of being finished.