Annual Information Statement 2016

Legal Name
Australian Leukodystrophy Support Group Inc.

Section A: Charity Information

Other names charity is known by (such as trading name)
  • Leukodystrophy Australia,
  • , pre 2015 ALDS
Charity size
Basic Religious Charity

Section B: Activities

Did the charity operate in the 2016 reporting period?
Main activity
Other health service delivery
Main activities
  • Advocacy and civic activities
  • Emergency and relief
  • Income support and maintenance
  • Mental health and crisis intervention
  • Research
Description of charity's activities and outcomes
Supporting Our Families: Leukodystrophy Australia is aware of nearly 250 families or individuals affected by a leukodystrophy across Australia.Assistance: To families - newly diagnosed and beyond; emotional support; advocacy to assist connection with relevant services; equipment and aids; direct financial support where possible, through volunteers, counselling and peer support.Raising Awareness: As Leukodystrophy remains an under-diagnosed and misunderstood condition, Leukodystrophy Australia 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 support various fundraising events; and have provided guest speakers for presentations, where members of Leukodystrophy Australia have related their personal stories.Encouraging Research: Leukodystrophy Australia contributes to research into Leukodystrophy where funds and opportunity allow. We established a close connection with UNSWs Dr Matthias Klugmann (2014), 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
Will the charity change or introduce any activities in the 2017 period?
Where the charity conducted activities during the 2016 reporting period
  • Australian Capital Territory
  • New South Wales
  • Northern Territory
  • Queensland
  • South Australia
  • Tasmania
  • Victoria
  • Western Australia
Who was helped most by the charity's activities in the reporting period
  • Families
  • Financially disadvantaged people
  • People with chronic illness (including terminal illness)
  • People with disabilities
Did the charity provide funded support and/or services to participants of the National Disability Insurance Scheme in the 2016 reporting period?
Does the charity intend to provide funded support and/or services to participants of the National Disability Insurance Scheme in the next reporting period?

Section C: Human Resources

Human resources
  • Part time employees: 2
  • Estimated number of volunteers: 8

Section D: Finance

Accounting method used in the 2016 reporting period
Charity's 2016 reporting period
1 July 2015 to 30 June 2016
2016 Financial report
Note: If you want to see the financial report or annual report that this charity has submitted, go back to Financials & Documents.

Income and Expenses

Income Statement summary

Donations and bequests
Government grants
All other revenue
Total revenue
Other income (for example, gains)
Total gross income
Employee expenses/payments
Grants and donations made for use in Australia
Grants and donations made for use outside Australia
Other expenses/payments
Total expenses/payments
Net surplus/(deficit)

Balance Sheet Extract

Total assets
Total liabilities
Net assets/liabilites