Our families are supported by a highly skilled multidisciplinary team comprised of Aboriginal Health and Community Workers, Health Professionals and Family Support Workers.
Our team listens from the heart and responds with holistic person-centred practice. We work in partnership with families living with MJD and SCA7, by valuing and respecting a ‘two way’ approach. We work to improve community transport options and accessibility.
We provide innovative assistive technology solutions to meet individual and community needs, supporting people to stay at home and in their community.
The process of engaging sensitively with families, sharing information, and conducting testing in a manner that is appropriate to individual and family sensibilities is vital to effective engagement with people living with MJD and SCA7. To do this requires stepping outside of the classic biomedical, outpatient, specialist model of service delivery.
We have co-designed an effective genetic-service model with families living with MJD and the Northern Territory Genetics Service (through VCGS). Our model incorporates a shared understanding. It involves relationships, continuity and trust, and incorporates a family approach. It has been led by our clients and families, resulting in high levels of engagement.
The MJD House program offers all of our clients, carers and families respite at one of our two Darwin-based houses. We aim to offer clients and carers an opportunity to spend time in a peaceful, safe environment, and we arrange outings, picnics, specialist therapy appointments, movies, shopping, and time to connect with other family members in town. Traditionally, respite has been geared towards ‘giving the carers a break’, meaning carers stay home while the client is cared for by others, but MJD House recognises that family connections are paramount, so we welcome carers along — and pamper them as well. The main aim of the MJD House program is to support clients and carers to remain ‘Stronger for Longer’, enabling MJD clients to remain living on country for longer.
Undoubtedly, one of the most rewarding aspects of our work is the Kin Connect program, where we assist clients living in supported accommodation to return to their remote community. For people with complex personal care needs, this can be an enormous logistical challenge, as they can require 24-hour care. Our Operations, NDIS and Finance teams, external care organisations, GPs, CareFlight, local Land Councils, Clinics and Aged Care all need to be involved. But the evident joy we see from clients and families when people are back On Country makes all the effort worthwhile.
It is important that MJD and SCA7 families have the best information about these diseases, and the best ways to manage them. We stay in touch with MJD and SCA7 researchers around the world and share the latest news with our families. We are always looking to make life better for people with MJD or SCA7, and researchers work side-by-side with us. We know that it is important to keep searching for a treatment and cure, and we continue to raise money for this.
Click here for a complete list of publications MJDF has either funded or been involved in.
We believe that our clients and families receive better support if people in their lives understand more about MJD and SCA7. We provide education to clients, their families, health professionals, care-workers and other support organisations. We provide genetic education and counselling so that families better understand how MJD is passed down through families. We also has a range of resources and conduct educational events designed to strengthen the capacity of those who care for people with MJD or SCA7.
We strive to improve outcomes for our clients by ensuring the people who can make a difference, understand about MJD, and understand how policies impact people’s lives.
Click here for a complete list of submissions MJDF has developed.