Supporting research into multiple systems atrophy

A Melbourne family has raised more than $90,000 to support vital research at The Florey into the incurable brain condition that claimed the life of Tania Barrot.

Tania was a much-loved mother, wife, daughter and friend when she sadly lost her battle with multiple system atrophy (MSA) in early 2021.

MSA is a rare and progressive brain condition with no cure. MSA shares symptoms with other neurological diseases making it difficult to diagnose.

After she fell ill, Tania and all her loved ones had to cope and adapt to her progressively declining health without a clear understanding of how her disease would progress.

Tania Barrot

Tania’s husband Trevor said not having a definitive diagnosis early was very difficult for the family.

“Tania had multiple hospital admissions, ongoing diagnostic testing, constant changes to her medication and saw many different clinicians. If we’d had a definitive diagnosis early in her disease this would have changed how we responded to the illness. It wouldn’t have saved Tania, but it might have made the time we had left with her easier.”

Tania left behind Trevor, son Cambo, daughter Georgie, stepdaughter Mikahla, four sisters, her parents Nola and Gerry, a circle of friends of many years, and nieces and nephews who all loved her very much.

In March 2023, two years after Tania’s death, her family organised ‘One More Night for Tania’, a fundraising event.

“’One more night’ was one of Tania’s favourite songs,” said Trevor.

A man and two women, with an older man dressed in eveningwear at a fundraising event
Tania Barrot’s family (L-R): children, Cambo, Georgia, Mikahla and husband, Trevor

“We wanted to honour our beautiful Tania, but we also wanted to do something practical to support the Victorian Brain Bank at The Florey, which stores MSA brain tissue and provides samples to scientists, allowing further research into diagnosis, treatment and one day hopefully a cure.”

The family and their supporters raised more than $45,000 which The Florey has matched, resulting in a funding boost of more than $90,000 to support research integral to better understanding MSA.

Florey Director Professor Trevor Kilpatrick thanked everyone who supported ‘One More Night for Tania’.

“We are so very grateful for your generosity in Tania’s memory. The Florey depends on external funding to be able to continue with our world-leading research in neuroscience and mental health.

“The Victorian Brain Bank is integral to The Florey, and your substantial gift will make genuine difference to its work. Thank You,” Professor Kilpatrick said.

About multiple system atrophy (MSA)

MSA is a rare Parkinsonian condition which affects movement, breathing, blood pressure and other body functions. About 3000 people in Australia currently live with MSA.

Florey Professor David Finkelstein is working to create a treatment for MSA.

“Unfortunately, there are currently no disease modifying treatments for MSA,” Professor Finkelstein said.

“However, we have partnered with industry and are excited to bring a potential Florey developed treatment from the bench to clinical trial.”

Read more about multiple systems atrophy

If you have concerns about MSA, please contact Fight Parkinsons.