What We Do
The organisation exists to provide information, support and advocacy to individuals and families affected by leukodystrophy, to raise awareness of this group of conditions, and to encourage leukodystrophy-related research.
Receiving a diagnosis of leukodystrophy can be a challenging and stressful time. Due to the rarity of the condition, it can be difficult to access accurate and relevant information & supports; the symptoms can be quite vague and associated with other disorders, so diagnosis is often difficult and time-consuming. It is common for individuals & families to feel a sense of shock, isolation, and fear of the unknown during this time. Depending upon the leukodystrophy, the rate of progression can vary significantly from one person to another.
Leukodystrophy Australia supports many individuals and families, who may be at any stage of their journey with leukodystrophy, from awaiting confirmation of diagnosis, through dealing with the health and socio-emotional impact of the condition, to bereavement and beyond.
In addition to working with individuals and families impacted by leukodystrophies, the organisation also works closely with the wider community, local and overseas Medical & Scientific communities, having also established a National Clinical and Research Network of local experts with interests in the field of leukodystrophies.
Leukodystrophy Australia recognises that managing a leukodystrophy is not just about the clinical side of things – everybody’s needs are different. There are therefore many considerations, including the need for understanding physical and emotional requirements, financial factors and others. We provide the following types of supports & services:
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Emotional and practical support to individuals and families
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Information and advocacy
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Professional liaison with local services (with consent)
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Up-to-date information via our website, newsletters, and social media
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Linking families with similar conditions or experiences, for peer support
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Raising funds to enable us to offer a range of supports to individuals and families, including access to equipment, services and financial aid
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Supporting research, community education and awareness-raising
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Help to obtain Genetic Counselling
Our Family Advocate program services members Australia-wide. We aim to support individuals and families impacted by leukodystrophy, by ensuring their needs are met by their local Case Management and extended services in a timely and effective manner and that they are treated with respect and dignity.
Leukodystrophy Australia receives no Government funding. Instead the organisation relies on the generosity of donors, subscribers, fundraisers and philanthropic organisations to maintain the level of support that we know individuals & families affected by this group of conditions need and deserve.
Vision & Mission
Leukodystrophy Australia is the national peak organisation representing people impacted by leukodystrophy. We collaborate with local, national and international stakeholders to advance the care of our members, improve quality of life and ultimately seek a cure for leukodystrophy.
Vision
Empower people affected by leukodystrophy, through knowledge and support, to lead their best lives.
Mission
We strive to support people throughout their leukodystrophy journey and beyond. We foster member connections, provide service linkages, financial support, education, advocacy and promote current trends in treatment and research.
Objectives
- Support, advise and assist individuals impacted by leukodystrophy throughout their life journey
- Support parents, partners and other caregivers in their caring roles
- Maximize the quality of life for those impacted by leukodystrophy
- Provide advocacy for those impacted by leukodystrophy at a micro and macro level
- Operate in an effective, efficient, transparent and accountable manner
Values
Leukodystrophy Australia is committed to the following values:
Respect:
We respect and recognise our members’ abilities, qualities, achievements and lived experiences.
We strive to ensure equitable access for all people with a focus on priority populations (Aboriginal and Torres Strait Islander peoples, people living in regional, rural and remote areas, people from Culturally and Linguistically Diverse backgrounds and people experiencing socio-economic disadvantage).
We demonstrate a commitment to providing respectful, safe and inclusive support for people of all abilities, gender identities and ages.
Self-determination:
We support and advocate for the rights and choices of members in their health and wellbeing decisions.
We work collaboratively with health professionals and other service providers to assist members to reach their full potential.
We promote and contribute to multidisciplinary research that seeks to improve treatment, quality of life and find a cure for leukodystrophy.
Accountability:
We have rigid and transparent practices and processes that value the contributions of people affected by leukodystrophy, members, volunteers, donors, and beneficiaries ensuring accountability, financial integrity and high-level service delivery.
Professionalism:
Our employees, committee members and volunteers demonstrate professionalism in undertaking our organisational activities.
Our service delivery is guided by the principles of social justice, accountability, transparency, trust, equality and equity.
Evidence informed:
We incorporate our members’ experiences and feedback, current research and ongoing professional development to inform our program and support services planning and delivery.