Annual Information Statement 2013

Legal Name
Australian Leukodystrophy Support Group Inc.

Section A: Charity Information

Charity has a financial year ending 30 June
Financial year ends
Information Unavailable
Charity size
Purposes of charity
  • The relief of poverty, sickness or the needs of the aged
  • The provision of child care services
  • Other: To provide information, support and advocacy to individuals and families affected by leukodystrophy, to raise awareness of the impacts of this group of conditions, and to encourage leukodystrophy-related research.
Basic Religious Charity
Charity is part of an approved ACNC reporting group

Section B: Activities

Activities in the 2013 reporting period
Main activity
Other health service delivery
General activities
  • Emergency and relief
  • Grant-making activities
  • Mental health and crisis intervention
  • Research
  • Social services
  • Other recreation and social club activity
Description of charity’s activities and outcomes
Supporting Our FamiliesALDS is aware of nearly 250 families or individuals affected by a leukodystrophy across Australia.During 2012/2013 we provided assistance to families via information for those newly diagnosed; emotional support; advocacy to assist connection with relevant services; equipment and aids; direct financial support where possible; and, through volunteers, counselling and peer support.Raising AwarenessAs leukodystrophy remains an under-diagnosed and misunderstood condition, ALDS is committed to raising awareness of the condition.To do this, we have maintained a website and Facebook presence; we held a 20th Anniversary Conference; we continued to publish a quarterly Newsletter with a circulation of approximately 500; we conducted or participated in various fundraising events; and have provided guest speakers for presentations, where members of ALDS have related their personal stories.Encouraging ResearchALDS contributes to research into leukodystrophy (and its effects) where funds and opportunity allow.During the year, ALDS established a close connection with UNSWs Dr Matthias Klugmann, whose work includes gene therapy research into the leukodystrophies; we provided placements for students undertaking relevant courses at various universities; and we initiated a Clinicians and Researcher Network (Leukodystrophy and Leukoencephalopathy) network, comprising doctors and scientists in 5 states.
Changing or introducing activities in the next reporting period
Beneficiaries helped by charity’s activities in the 2013 reporting period
  • People with Chronic or terminal illness
  • Other
    • Research scientists University of New South Wales

Section C: Resources and operating locations

Estimated number of unpaid volunteers who worked for the charity during the 2013 reporting period
  • Full time employees: 0
  • Part time employees: 2
  • Volunteers: 6
Where the charity operated during the 2013 reporting period
  • Australian Capital Territory
  • New South Wales
  • Northern Territory
  • Queensland
  • South Australia
  • Tasmania
  • Victoria
  • Western Australia

Section D: Reporting and regulatory obligations (This section is optional)

State or territory charity had non-corporate reporting obligations to
  • New South Wales
  • Queensland
  • Victoria
Approximate hours spent reporting by paid staff
Approximate hours spent reporting by unpaid volunteers
Total hours spent reporting

Section E: Financial information provided voluntarily

2013 Financial report
Note: If you want to see the financial report or annual report that this charity has submitted, go back to Financials & Documents.