In the past it has been very difficult for parents to find any information at all about this illness. The rarity of the disorder means that few doctors are aware of it and parents of course want to know, on a practical level, how they can best help their child.
Secondly, in order to effectively combat the devastation of the disease and to fully support research efforts to unravel the mysteries of Batten disease, the worlds of medical science and the families and friends of affected persons must meet and work closely together to reach understanding and common goals.
Hence in an effort to bring those common goals to fruition, the Batten Disease Support and Research Association (BDSRA) was formed in the USA in July 1986. The Australian Chapter of the BDSRA was formed in 1995 by parents of children affected by Batten Disease. Seeing the tremendous need for unified entity that would work toward important goals and recognising, as well, the need for support for family, friends and carers, the founders designed the association to:
- Provide a parent communication network, information and emotional support to families of persons affected by Batten disease (refer to Contacts section)
- Act as a national registry for NCL researchers throughout the world and endeavour to support their work
- Maximise the opportunities of persons affected by Batten disease
- Educate all concerned about the special needs required
The current Committee is represented by:
Harry Partridge of NSW as President;
Sara Halley-Millenbach of WA as Vice President;
Ian Tweedie of NSW as Treasurer;
Jane Seychell of NSW as Secretary; and
Vanessa Anderson of NSW as Operations Manager.
In order to effectively combat the devastation of Batten Disease, this Chapter is regulated under the following:
Australian Registered Body Number: 073 435 202
Australian Business Number 56 056 138 99
Tax Deductible Gift Recipient
Charity Fundraising Licenses:
New South Wales 14877
South Australia 1298
Western Australia 20952
The BDSRA is: "A light in a world of darkness….."