Australasian Leukodystrophy Foundation | Incorporated No. IA41033

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  • BREAKING NEWS

  • 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.
  • 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.
  • bluebird bio Reports Interim Clinical Data from Starbeam Study. Click here to read the full report.
  • CRITICAL – LCN Clinical Issues Survey
  • Use the above link to complete the survey. Without this information we cannot improve the standard of care and build a knowledge database to assist our families.
  • Bluebird Bio will be releasing an information abstract from its Starbeam trial at its annual general meeting in April. Click here to see the press release.
  • We have added some articles in a new section “Grief & Wellness. Click on the link to read the articles
  • DATE CHANGE:
  •  ALD Connect Webinar ‘Vera’. Click here for more information
  • Adrenoleukodystrophy has been added to the Recommended Uniform Screening Panel in the USA. Read more here

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Welcome

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.