How one man’s bequest is revolutionising MSA research

In 2022, Dr Michael Janitz was a researcher with a big dream: to develop a test that would help sufferers of multiple system atrophy (MSA) – a rare and poorly understood neurodegenerative disease that impairs mobility, breathing, sight and speech. It affects about 2500 Australians.

“I wanted to deliver something practical that would help as many people as possible,” says Dr Janitz, a molecular geneticist at UNSW’s School of Biotechnology and Biomolecular Science. There is currently no cure or treatment for MSA, but early diagnosis enables better management of the disease, and could one day lead to more effective treatments.

At the time, Dr Janitz had been researching MSA for more than a decade, having come to it from the study of other neurodegenerative diseases such as Alzheimer’s and Parkinson’s. “I realised MSA was an area ripe for further research, as there was very little known about the condition.”

Because the clinical symptoms of MSA are similar to Parkinson’s disease, many people spend years going from specialist to specialist before finally getting a correct diagnosis. The average time from diagnosis to death is seven to nine years. “This highlighted the need to develop a test that could provide unequivocal diagnosis,” says Dr Janitz.

Dr Janitz and his team at UNSW are world leaders in the field of transcriptomics for MSA. Transcriptomics is the study of all RNA molecules in one cell or cell population. Using next-generation sequencing tools, the team was hoping to identify RNA molecules specific to MSA and in so doing develop a blood test.

But securing the money to do this was a big hurdle. “It’s a very under-funded area in general. There are no dedicated government-funded programs for MSA,” says Dr Janitz.

After being approached by members of the public wanting to donate to MSA research, in 2012 Dr Janitz helped set up the MSA Research Fund at UNSW. Donations started to trickle in – mostly from those afflicted with the disease, and their friends and family.

By 2022, the fund had attracted about $100,000 in donations – a healthy sum, but not enough for Dr Janitz and his team to realise their dream of developing a blood test. 

The gift that changed everything

“It was early October 2022 when I got the news. One of the MSA patients I’d been in close contact with, Michael Chahine, had tragically passed away. His executor confirmed that Michael had left a large gift to the MSA Research Fund at UNSW,” Dr Janitz explains.

That gift eventually translated into a $2 million windfall for Dr Janitz’s team.

“When we found out the size of Michael’s bequest, I went from shock to excitement. I realised we could actually start to execute our plans,” Dr Janitz recalls.

Dr Janitz first met Michael Chahine in 2016 after Michael reached out to him, wanting to know more about his research. “He was very knowledgeable about the disease and driven to learn more. From our first meeting, he listened very intently to what we were saying and what we were trying to achieve. I think his diagnosis made him realise that research would be a good thing to support. Not everyone with MSA thinks that way. Research is slow – it won’t deliver outcomes in a year. Michael recognised that, but he still chose to support us. He wasn’t just thinking of himself – he was thinking more broadly about the future. This was an amazing thing about Michael.”

The man behind the generous bequest

Until his untimely death from MSA at the age of 72, Michael Chahine had been a successful fashion retailer, arts enthusiast and bohemian traveller. He was a lover of life and a man of the people.

“Michael was a character, he really was. He had a lot of friends and they all loved him dearly,” says Brendan Hill, one of Michael’s closest friends. The pair first met playing in snooker tournaments in the ’80s, and quickly hit it off.

Michael had built up a successful clothing business in Australia. He used to travel the world buying clothing that he later resold in Australian stores. “At the end of the day, he did very well,” says Brendan. “But he wasn’t one of those people who splashed his money around. He could be frugal. But he could be very, very generous too.”

Michael took a keen interest in art and photography, making many friends that way. He bought an old factory in Lilyfield and let his artist friends live there for free. He also amassed a large collection of artworks created by his friends, which he proudly displayed in his home.

“Michael always believed in art as a medium to create change,” says another close friend Brennan O’Connor, a Canadian documentary photographer based in Thailand and Taiwan. The pair first met in Thailand in 2008. At the time, Michael was creating papier-mâché artwork of giant ears to bring attention to a small ethnic group in Myanmar whose ears were being cut off by the Myanmar Army.

“Michael was always a humanitarian. He cared about people in other parts of the world, especially people in impoverished countries,” Brennan says.

A self-described “advocate for the little guy”, Michael made sure to give back to the countries he visited. He supported orphanages and a program to eradicate land mines in Cambodia, helped political parties in Timor and enabled several children in China to undergo surgery to fix harelips.

A lasting legacy

Two years on from Michael Chahine’s death, his generosity is still being felt – and his impact is only set to grow.

His $2 million gift is enabling Dr Janitz’s team to further investigate circular RNAs as potential molecular biomarkers for MSA.

“Michael’s bequest has been a game changer, lifting our research to another level in terms of scale and complexity. He gave us the ability to really accelerate and expand our vision,” Dr Janitz says. “Finding a way to treat MSA is obviously the end goal, but we need to understand the disease better first.”

With the boost of Michael’s gift, Dr Janitz thinks his team will be able to create a blood test to detect MSA in five years’ time.

Dr Janitz and Michael kept in contact over the years, even as Michael’s condition deteriorated and he was confined to a wheelchair. Michael often reached out to discuss new MSA research.

“He was an active person and full of initiative. He became very passionate about helping us – even offering himself as a test subject,” Dr Janitz says.

“We researchers are usually very dry and unemotional, right? But Michael was truly an inspiration. He always ended his emails with: ‘KEEP FIGHTING’ – in capital letters. He gave us so much motivation to keep going.”

Brendan also remembers his late friend’s deep-seated drive to help others. “Michael knew that nothing could be done for him and that any cure would come long after he was dead. His bequest to UNSW was his way of helping Dr Janitz find a test and eventually treatment and even a cure, so that no one else would have to go through what he was going through. He wanted to make a difference."

Leave a lasting gift by making UNSW a beneficiary in your will. For more information, contact giftsinwills@unsw.edu.au or +61 478 492 032.