CaRE webinar video featuring dementia researchers and advocates now published

The webinar featured short presentations followed by a panel discussion.
L-R: (Top row) David Derby, Lucy Vivash, Tara McDonald; (Bottom
row) Juliana Silva, Nadine Andrew, Malcolm Johnson. See video.

The Community and Researcher Engagement (CaRE) committee hosted a webinar on 18 May 2022, "What we know about the brain and how it changes with dementia", which covered a range of relevant topics and perspectives relating to dementia, from the perspectives of those affected by the disease, clinicians, and researchers.

With dementia being one of the leading cause of death and a significant cause of disability in Australia, particularly in older populations, most of us will—at some stage, and in some way—be touched by the disease.

See:

• Webinar recording (1:30:20 hrs)
• Program (pdf, 3.2 mb)
• CaRE news and events web page
  

Visual Snow Syndrome research challenges: Rare Disease Day feature

L-R: A/Prof Jo Fielding says of Visual Snow that "it is very difficult,
if not impossible to diagnose"; and patient advocate Patricia says VSS
is "quite challenging". See video (1:57 mins)

Part of our special series for Rare Disease Day featuring patient advocates and CCS researchers 

The Department of Neuroscience’s Associate Professor Joanne Fielding is involved in research on Visual Snow Syndrome (VSS), a neurological condition primarily affecting the processing of sensory information. Even though it is thought to affect up to 2% of people, it is not widely recognised or diagnosed correctly by the medical community. 

Brain disease patients to benefit from CCS-led study: Rare Disease Day feature

L-R: Patient advocate Amanda and CCS researcher Dr Mastura

Monif talk about the experience of living with the illness and the

challenges of research into the disease. See video (2:19 mins).

Part of our special series for Rare Disease Day featuring patient advocates and CCS researchers 

The Department of Neuroscience’s Dr Mastura Monif is involved in research about Autoimmune Encephalitis, which affects 5-15 in 100,000 people. Autoimmune Encephalitis is a type of brain inflammation caused when the immune system mistakenly attacks healthy brain cells.  

Brain imaging reveals insights into movement disorder: Rare Disease Day feature

L-R: Patient advocate Marcus and CCS researcher Dr Ian Harding
talk about the experience of living with the illness and the
challenges of research into the disease. Video (2:09 mins)

Part of our special series for Rare Disease Day featuring patient advocates and CCS researchers 

Friedreich ataxia (FA) is a debilitating genetic disorder that causes progressive damage to the nervous system and heart. Defined by problems with gait, balance and motor coordination, speech and swallowing, its symptoms generally start in childhood or adolescence and progressively worsen, causing increasing difficulty with basic daily activities and self-care, and ultimately leading to premature death 20 to 30 years after first symptoms. It affects 2-4 people per 100 000.

Dr Ian Harding and his team in the CCS’s Department of Neuroscience have recently made some exciting advances in knowledge using a variety of magnetic resonance imaging (MRI) and positron emission tomography (PET) brain imaging techniques.

Scientist seeks clues on ‘missing’ parts of immune system: Rare Disease Day feature

L-R: Patient advocate Nadine and CCS researcher Dr Emily
Edwards talk about the experience of living with the illness and the
challenges of research into the disease. See video (2:05 mins)

Part of our special series for Rare Disease Day featuring patient advocates and CCS researchers

Dr Emily Edwards, a Research Fellow with the Monash Department of Immunology and Pathology at The Alfred precinct, is working to uncover the DNA errors or genetic variants that cause Primary Immunodeficiency (PID), a rare inherited condition where part of the immune system is missing or not functioning as it should.