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Organisation : Australian Leukodystrophy Support Group Inc trading as Leukodystrophy Australia

Location : Online

Time required : ASAP

Duration of project : ongoing

Sector : Disabilities, Families, Foundations, Trusts & Philanthropy, Health – General, Mental Health, Other, Research / Medical Research

Posted on : 1 Aug, 2019

About the role

Seeking a Treasurer for small NFP organisation supporting people across Australia, living with the rare and deadly disease, Leukodystrophy. In fact we are looking fo fill 3 volunteer roles – President, Treasurer and Committee Members required to take us forward, a new team.

Leukodystrophy Australia
Leukodystrophy Australia is the national peak organisation representing all people impacted by Leukodystrophy. We share in the same vision to source a cure for Leukodystrophy worldwide. We collaborate internally and externally with all stakeholders to advance the care of our members.

Number of Paid Staff: 1.2
Number of Volunteers: 2-6
Community Segment: Health, Disability, Wellbeing

Current Board Size: 5
Board Meetings (frequency): Bi-monthly
Board Meetings Held: At night
State where Board Meetings Held: Teleconference from any state
Other Meetings/Events: AGM, other occasional events where possible i.e. Family Gathering
Local Government Area: Melbourne
Payment: Nil – honorary role

About these vacancies:
Leukodystrophy Australia (LA) Board positions vacant – President, Treasurer, General Committee. People with skills to share: Governance, Finance, Medical, IT, Social Media, Networks, an interest in rare disease.

We are seeking experienced and committed qualified persons with an interest in maintaining an effective, professional and accountable Committee to oversee operations in our Mission to support and empower individuals and families living with the rare disease, Leukodystrophy, to live their best possible life.

As a specialist not-for-profit LA is the peak support organisation in Australia, providing information and support across all stakeholders, in a non-discriminatory and equitable basis to some of the most disadvantaged and isolated men, women and children across Australia.

We advocate for clients and educate stakeholders, operating holistically to empower and assist individuals and families and the common issues they face.

LA embraces innovation in responding to emerging issues in the health landscape. We are seeking enthusiastic individuals who align with our Vision, Mission and Values.


A World free of Leukodystrophy.


We assist in empowering people throughout their Leukodystrophy journey and beyond. We offer support, foster member connections, provide service linkages, education, and advocacy, and promote current trends in treatments and research.


Leukodystrophy Australia are committed to the following values:
• Respecting and recognising our members’ abilities, qualities, achievements and their lived experiences.
• The rights and choices of members to have a say in their health and wellbeing.
• Collaboration with health professionals and other service providers to assist members in reaching their full potential.
• Rigid processes by which members, donors, beneficiaries and their financial contributions assist in sustaining service delivery.
• Current multidisciplinary research in the hope for improved outcomes for members and finding a cure for Leukodystrophy.
• Professionalism in all activities and a team environment.
• Service delivery informed by the principles of social justice, accountability, transparency, equality and equity.

LA is at the early stages of a new strategic sustainability journey. With a re-brand in 2015, plans for growth of services to meet our clients’ needs and increasing client demand due to advancement in genomics, we see an increase in numbers diagnosed. Securing alternative sources of funding, and expanding our Family Advocate Program are areas of focus for the year ahead.

As we strategically look at succession planning, we would like to appoint Committee Members with significant financial and governance experience, other talented and varied to you skills, as we sustain our organisation into the future.

Please contact our Office Manager for further information, including Role Descriptions. Our Committee Vacancies (3). We encourage all candidates to apply. Our goal is to make everyone feel involved, respected and connected.

Please include in your expression of interest:

A cover letter outlining your interest in the position and relevant skills

A Curriculum Vitae (limited to 2/3 pages) outlining:
• your contact details – phone and email
• your experience including relevant employment and volunteering, honorary positions held and qualifications.

Do you have further questions?
For a confidential discussion about the position, please contact:
Bronwyn Byrne 0418 755 994 or 1800 141 400

Please note: screening and interviews may take place prior to the advertised close date. As such, please submit your EOI as soon as possible. Please send your Expression of Interest to Bronwyn Byrne with the subject line “Expression of Interest: LA Committee.”

Applications are acknowledged by email and treated in confidence. We look forward to hearing from you.

About the organisation

Organisation name : Australian Leukodystrophy Support Group Inc trading as Leukodystrophy Australia
Not for Profit : Yes

How to apply

Applications not allowed for this volunteering opportunity.

Please quote in application: Treasurer via Pro Bono Australia.


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