Fund Eye Gaze support for Professor Neville King

I am fund-raising in support of my acutely ill cousin, Professor Neville King, who has a neurodegenerative condition.

Neville, currently in his mid-seventies, suffers from late-onset Huntington’s Disease (HD), a rare genetic disorder of the central nervous system. He has lived in Australian nursing homes since 2018 and requires 24-hour support.

This is a particularly cruel disease that has now robbed Neville of the ability to communicate through speech, writing or even typing.

As a speech pathologist, I was able to organise a trial using eye gaze equipment in April 2023. This showed Neville is capable of communicating with his eyes using the TD Pilot system. While prohibitively expensive, the system is based on an iPad and buttons are activated by the person’s eyes ‘dwelling’ on them. Basic phrases can be converted to voice. Simple things like ‘I’m thirsty’.

Neville was born and raised in Railton (Tasmania) and studied at the Universities of Tasmania and La Trobe in Melbourne. During his career as a psychologist, Neville specialised in cognitive behaviour therapy and his vast body of research is recognised internationally. He taught for decades at Monash University in Melbourne. Neville was recently honoured with an Officer of the Order of Australia for his contributions to humanity.

…and now he is locked in a body that prevents him from communicating. To aid Neville, by providing a basic level of communication, would be life-changing. After all he has given to the community over the years, now is the time for Neville to be supported in return.

Eye gaze technology is expensive. The equipment costs around AUD $20,000 but Neville is not eligible for any government disability funding due to his age.

For this project, additional costs include time, travel and accommodation for specialists living in Melbourne and Tasmania to initiate and monitor a communication program centered on the TD Pilot equipment.

When first diagnosed in 2011, Neville expressed a desire to help others through his HD experience. Funds raised with this page will be used to study and record Neville’s progress and achievements with eye gaze technology. This pilot study has the potential to stimulate much-needed research that is critical to improve the experience of people living with HD, throughout the world and especially in Tasmania which has the highest incidence of HD in the Western world.

I pledge, that when Neville is no longer able to use the purchased equipment, it will be passed, in its entirety together with the research knowledge gained, to the Huntington’s Disease Association of Tasmania for use by others in similar circumstances.

Monies raised for this project and anything over $30,000 will be used for:

• Purchase of the initial TD Pilot eye gaze equipment

• Specialist expertise for the instigation of Neville’s communication program

• Project research and data collection throughout the case study

• Training for a communication partners support team

• Stipendiary for support team expenses

• …and as far as possible, additional eye gaze equipment for the HD Tasmania equipment library

Please support this important ground-breaking project. Your generosity will be much appreciated by Neville and others who will benefit from this initiative.

I look forward to taking a lead role in making Neville’s wish a significant legacy.

Elizabeth Little

Certified Practising Speech Pathologist

Melbourne, Australia