The Australian Chapter of BDSRA

This National Day allows communities, members and friends to unite in fundraising and raising awareness by reaching out to the public.  This day nominated by the Australian Chapter, incorporates many events and activities which can be found at the Fundraising & Events pages or by contacting the Awareness Promoter at the Contacts Page. 

Other valuable sources of awareness are:

Why do we need Awareness?

  • Whilst every family's ultimate wish is for a therapy that might reverse the progression of Batten Disease and restore their child's normal brain function, in the year 2013, this is merely just a dream. Yet if we are somehow able to be able to just slow the progression of the disease then we can take steps to cure this disease and SAVE our children. Battens parents live in HOPE that one day, this can be achieved. Treatment and a Cure depend not only upon the brilliance and perseverance of our dedicated researchers, but also upon the world-wide awareness and availability of research funding.
  • Furthermore, a lack of knowledge and assistance prevails in diagnosis, care management and areas such as pain, behavioural challenges and schooling.  Every parent and its community endures isolation and often breakdowns in existing relationships. 

In addition to fundraising, the BDSRA endeavours to overcome these barriers by reaching the public in various ways.... Read More