Its first objective is to make as much advice and information about adrenoleukodystrophy in all its forms readily available to anyone, medical or personal, and to offer support to affected families. Full information can be accessed on their website - www.aldlife.org. On this website you will find practical advice, latest research news, a place to contact and speak to others, what fundraising is going on, plus useful links to other sites.

Our second objective is to raise as much money as possible. All research into the condition is charity or private funded so fundraising is a very important part of this site. We also felt that we should help the hospices that assist affected families as these are a much needed lifeline. As Alex has now stabilised I have found that alternative therapy has been a great help to him but expensive, so thought we should make grants available to families who wished to pursue alternative therapies. We will split any funds raised between these. www.aldlife.org/fundraising.asp.