July 2021

The Tick-Borne Disease Research Program

We are so thankful to everyone who came along to the soft launch of the Tick-Borne Disease Research Program on Thursday 10th of June 2021, the coldest day in Sydney for 25 years! Patients, families and medicos gathered to support and learn about this research program which is very close to the Snow family, with lived experience of the disease. We are excited to back an expert, world renowned multidisciplinary team and work with the NORTH Foundation to support this crucial research into better understanding the source of infection, diagnosis and treatment pathways for patients suffering with potential tick-borne diseases.

 

In Australia, tick-borne disease continues to be a mystery. Patients are confused, with many unanswered questions. A growing number of patients around Australia are suffering from the symptoms of a chronic debilitating illness of which the initial cause remains unknown. However, many associate these symptoms with a prior tick bite and subsequently tick-borne illness or tick-borne disease. Ticks are parasites that feed on animal and human blood and approximately 16 of the 70 species found in Australia are known to feed on humans.

Our knowledge in this country about tick-borne disease is limited as we do not monitor or look for the possibility of the disease being present unless it is within a select set of conditions (such as tick typhus/spotted fever). This is further complicated by the limited diagnostic tests available in Australia which means that potential tick-borne disease is often not recognised or misdiagnosed at first instance. The research team will be undertaking a significant and first of its kind clinical research program which places patients at the centre of the study.

Thank you to the clinical panel at the event – Gilles Guillemin, Richard Schloeffel and Bernie Hudson and the patient panel for sharing their personal experiences with Tick-Borne Disease – Ginette Snow, Greg Dring, Rachel Stock and Jacqueline Stock. Thanks to the moderators Jennifer Herz and Georgina Byron AM.

We look forward to sharing more with you as this research progresses, and we encourage you to learn more here.

The lack of validated diagnostic testing in Australia leaves patients with tick-borne illnesses confused and lost in a system that ignores them. It is for this reason that my family and I, through the Snow Foundation, have chosen to support this research. Ginette Snow