Mualla McManus - founder of the Karl McManus Foundation
The Karl McManus Foundation was formed by neuroscientist and immunologist Dr Mualla McManus, whose husband Karl died from a tick-borne disease in 2010 after years of chronic symptoms.
It has no public funding and the research funds it has raised are mainly from sick individuals.
Dr McManus said research had already been done the 1950s proving the existence of a native borrelia strain dubbed "Borrelia Queenslandica", which was found in native rats.
What was still missing is the hard evidence of its presence in humans.
In June Dr McManus will address the World Health Organisation in Geneva about "the discrimination" against patients in Australia over tick-borne diseases.
"We want the WHO to look at it as borreliosis, which is the parent disease and the proper name for it. The trouble is there is no test which can test for all (of the) borreliosis (strains) effectively."
Dr McManus said the foundation has sought to collaborate in jointly-funded research with the National Health and Medical Research Centre (NHMRC).
Dr McManus said the Australian disease was for now being referred to as "Australian relapsing fever" in an effort to distinguish it from Lyme disease.
"The term Lyme disease should be removed from the debate in Australia to stop this controversy so we can address this disease properly," she said.
"We need a neutral name and a neutral approach."