Tom says

The past year has brought the importance of medical research discoveries and their impact to the fore. Researchers in all fields should feel that the value of what they do has been confirmed vividly by the epidemiology, immunology and vaccine development the public has learned so much about this year. 

One of the great attractions and motivations of a career in research is that its purpose is to benefit the wider community and even humanity. Young researchers should feel proud to be in a sector that is focused on progress towards a better future. It is our job to support them as much as possible. 

Of course, this altruism can be tested by the problems associated with getting grants and resources. Inevitably competition is fierce, but this has to be balanced with the clear benefits of working collaboratively in a team with other medical researchers, with clinicians and also with industry. 

While infectious disease is not one of the main focus areas at SVI, in 2020 several groups contributed to the battle against COVID-19, including by evaluating antibody tests, producing viral proteins, collecting and modelling data, and understanding the impact of COVID-19 on the development of diabetes. 

The past year has seen some major successes for the Institute. These include some areas of new activity for us, such as the Medical Research Future Fund grant obtained with partners including St Vincent’s Hospital, BreastScreen Victoria, The University of Melbourne and The University of Adelaide. The project will investigate new artificial intelligence algorithms for mammography interpretation. 

Another milestone is the commencement of a clinical trial initiated by SVI and funded by JDRF to test a new class of drugs for the treatment of type 1 diabetes. You can learn more in this edition of The Edman. 

A few individual highlights this year include the appointment of Carl Walkley as a full professor at The University of Melbourne, the prestigious international Paula Stern Award for Natalie Sims, and the TJ Martin Medal awarded to Winnie Tan for the best PhD thesis on the St Vincent’s campus. 

We also welcomed several new scientific recruits, including Professor Marc Achen and Dr Natalie Wee, and to our Professional Services team, Dr Nathalie Braussaud and Nicky Harris, who came on board at the very end of 2019. 

In closing I wish you well for the festive season and look forward to seeing you all in person, not just on a computer screen, soon.

Defying the odds

When Bianca’s first baby was born, she and her husband were over the moon. But when Ace was about 3 months old, they knew there was something wrong. 

“Ace was really unsettled and crying uncontrollably, so I took him to hospital,” says Bianca. “He was referred to a paediatrician, however, he got progressively worse, so he was re-admitted. They found some damage to the basal ganglia part of his brain, but they couldn’t provide a diagnosis, so I just threw myself into some physical therapy with him.” 

It wasn’t until some 5 months later that Ace received a diagnosis: Aicardi-Goutières Syndrome, a degenerative neurological condition with no available treatment. Ace has calcification in his brain, with small and thin blood vessels putting him at risk of stroke. The disease means he has lack of control in some parts of his body, and problems with his fine motor skills.

“Originally they thought that Ace would have to use his head to control his new wheelchair. But as soon as they put him in the wheelchair, he was straight on the joystick and knew exactly what to do,” says Bianca with delight.

When he was first diagnosed, Bianca and her husband Ian were told that the worst-case scenario was that he wouldn’t live past his 10th birthday. 

“He’s now 9 and we look back on that and think that all things considered, he’s a very healthy child. He doesn’t have hospital admissions, he doesn’t get sick, he doesn’t have seizures and he’s not on any other medication, so we feel confident he’ll surpass that 10-year mark. Others in our position haven’t been as lucky as we have.”

Bianca says that it gives her hope that research is actively focused on understanding the causes of the disease.

“We’re just a normal family. Ace’s condition is genetic, so what happened to us could happen to anybody, and I am grateful that Jacki and the team at SVI are spending their time on something that is very important to us.” 

“Ace is living his life with joy and happiness. Despite everything, Ace has allowed us to do some really great things that wouldn’t have been possible if he wasn’t who he is.”

Shedding light on a rare disease

Aicardi Goutières Syndrome, also known as AGS, emerges early in infancy. Children with the disease develop normally at first – then abruptly lose their communication and motor skills. Those children that survive their early years can be left with severe mental and physical disabilities. 

There is currently no cure for this rare but devastating disease. But research from SVI’s Christine Martin Fellow, Dr Jacki Heraud-Farlow, could change that. 

Jacki’s work is centred on a genetic pathway that uses a protein called ADAR1. ADAR1 enables a cell to ‘edit’ the molecules that belong to it by adding a tag to them. 

If a child is born with mutations in this pathway, their immune system reacts as if there is an infection present, even when none exists. That gives rise to AGS and its tragic consequences.

“I want to understand the genetic causes of the disease so that we can come up with new therapies to help these children,” says Jacki.

“We know that mutations in ADAR1 cause AGS, so we know it has an important role in the body. My aim is to understand how ADAR1 works and what other genes are important for its function.” 

Jacki is using a state-of-the-art genetic engineering approach to identify previously unknown genes that interact with ADAR1. 

The work is still in its very early stages, but several important leads have already been identified. Philanthropic support is helping to accelerate progress.

While Jacki’s focus is on the young people like Ace who are afflicted by AGS, her work could help many others. 

“The study of these rare diseases gives us vital information about our normal biology and how cells work, which is of value for all of us,” she says. 

“An example of this is that the study of ADAR1 is leading to new therapeutic opportunities in cancer, where we want to switch on the immune system to weaken a tumour.”

It’s discoveries like these that drive Jacki, whose ambition as a teenager was to cure cancer. She says: “We have some clear goals in mind with our research, but I also love the fact that sometimes our results lead us in completely unexpected directions that will have benefits we hadn’t imagined.”

Jacki’s work has been recognised with honours including the Susan Alberti Women in Research Award, the Marian and EH Flack Fellowship, an SVI Rising Star Award and 5point Foundation’s Christine Martin Fellowship 

Type 1 veteran inspires

In 1940, when Anna Moresby was diagnosed with type 1 diabetes, her parents were told that they didn’t expect her to live past 30. 

She says that her father’s attitude to the prospects for his then 4-year old daughter were different. 

“My father said ‘I don’t care what that doctor said, we’ll prove him wrong’.” 

Anna has well and truly defied those odds. Her milestone of 80 years living with type 1 diabetes was celebrated this year with the presentation of the Kellion Victory Medal, awarded by Diabetes Victoria to those who have lived with diabetes for more than 50 years. 

Diabetes Victoria sees the Medal as “a celebration of courage, determination, resilience and teamwork.” 

Anna is struck by the advances that have occurred over her lifetime. When she was diagnosed, doctors knew little about the disease and the treatments were relatively primitive. 

“We had a special saucepan that was bought just to boil up syringes. My father used a pumice stone to sharpen the needles. I can remember crying a lot in the beginning, when I had to have my injections.” 

Prior to the introduction of glucose meters, the only way that Anna’s parents could monitor her blood sugar was by mixing urine with Benedict’s solution. 

“I can remember my father boiling this up; we had a Bunsen burner,” Anna says. 

She admits they didn’t check very often because the readings were so unreliable. With two insulin injections a day and not being able to accurately check blood glucose levels, Anna experienced many hypoglycaemic episodes during her childhood. She remembers being teased at school because of this; the other students thought she received too much special attention. 

After migrating with her family to Australia as a teenager, Anna trained as a medical technologist, married and had two children. 

Throughout her lifetime she has been a big believer in diabetes education and has been active in peer support groups. 

“It was so good when the blood glucose meters came and when the educators came. The most important thing is to learn as much as you can about diabetes. Don’t let the diabetes rule you.” 

Anna is excited about recent research advances that have the potential to make life with type 1 diabetes easier. “I think it’s wonderful and I hope this new research really works, particularly for the younger ones,” she says.

Type 1 diabetes trial launched

The combined work over multiple decades of Professors Tom Kay and Helen Thomas has culminated this year in the launch of SVI’s BANDIT type 1 diabetes trial, funded by JDRF. 

The trial will test a drug called baricitinib, currently used in rheumatoid arthritis, for its potential to slow or stop the destruction of insulin-producing cells in people with newly diagnosed type 1 diabetes.

Helen and Tom tell us a bit more about their work that led to the trial.

What’s really exciting about the BANDIT trial for people with type 1 diabetes?Type 1 diabetes is an immune disease, but we still treat it by replacing insulin, not by addressing the underlying mechanisms. Insulin is essentially a bandaid treatment for the disease. Momentum has been building to transform our approach to type 1 diabetes treatment.

The BANDIT trial represents an opportunity to test a new treatment that may help people retain their insulin-producing capacity for longer, by protecting the cells from the immune system attack. If the trial is successful the body will make more of its own insulin, making type 1 diabetes easier to manage.

How did your team first discover that baricitinib could be used to treat T1D?We have been working on understanding the pathways that control the immune response in type 1 diabetes for over three decades. That work has given us a lot of insight into what is happening in the immune system of people who develop the disease.

We found that blocking one of these pathways could be useful for treating type 1 diabetes, but our ways of doing this in the lab could not be used clinically in people. We had to wait for industry to develop drugs, known as JAK inhibitors, that target this same pathway.

The drugs work virtually identically to the methods we used before, but give us the opportunity to test our findings in people with diabetes for the first time. 

What outcomes are you hoping to see in this clinical trial?We used JAK inhibitors in the laboratory to show that they would prevent immune cells from destroying insulin-producing cells. We found that the drugs do this partly by blocking effects of the immune system on the cells and partly by acting on the immune cells themselves. The fact that both are affected makes the treatment especially effective in our studies.

The drug we are testing has already been approved for the treatment of rheumatoid arthritis, so we know that it is safe and that it is effective in that disease setting. Our experimental results indicate that it modifies the course of type 1 diabetes in the lab. 

What are the next steps for baricitinib after this trial?We are hopeful that the results of the trial will be positive and that baricitinib or other related drugs will become available for people newly diagnosed with type 1 diabetes. We will need to satisfy regulatory authorities that use of the drug is justified, which is always appropriately challenging. We then will look at trials in people at different stages of the disease to test the disease-modifying effect. We imagine that the ultimate treatment for type 1 diabetes might involve combining a number of different strategies and we will continue working on these in the meantime.

SVI is currently enrolling participants for the BANDIT Trial. If you or your child have been diagnosed in the last 100 days, and are between the ages of 12 - 30, visit our website to enrol or for more information.

Tom Kay receives Kellion Award

Tom Kay has been announced as the recipient of the 2020 Kellion Award. This honour is granted by the Kellion Foundation and the Australian Diabetes Society (ADS) to an Australian who has made an outstanding contribution in diabetes research, clinical or service areas in Australia. 

The Award is recognition of the impact made by Tom over many decades on our understanding of type 1 diabetes and on the development of new treatment options for people with the disease. 

“I am honoured to receive this Award, which recognises the work of our team at SVI and the importance of team science in making major advances in disease treatment.”

As recipient of the Award, Tom delivered the Kellion Plenary Lecture at the ADS Annual Scientific Meeting on the 12th of November. 

Clearing the mind; research into Alzheimers

Professor Michael Parker’s group at SVI focuses on research into neurodegenerative disorders.

Michael says, “Today, almost half a million Australians live with dementia and around 1.6 million people are involved in their care. As our population ages, neurodegenerative disorders will represent an increasing burden.” 

Alzheimer’s disease is the most common form of dementia. It is generally diagnosed in people over 65 years of age, although in some unlucky individuals, it can occur earlier than this. 

Michael and his team have recently been awarded a grant from The National Foundation for Medical Research and Innovation (NFMRI), to explore new treatments for the disease. 

Michael says that Alzheimer’s is characterised by the presence of two types of deposits that form in the brain. The first of these deposits are called amyloid plaques and develop between the neurons in the brain. The second are called neurofibrillary tangles, and are caused by misfolded proteins found inside the neurons themselves. Both of these deposits result in the death of neurons and disruption of the signals that are required for normal brain function. 

The grant, funded jointly by NFMRI and The Mason Foundation (managed by Equity Trustees), will help the team find new drugs to clear the proteins associated with the toxic deposits. 

Michael says that the newly funded grant will help his team, including SVI researchers Dr Jon Gooi, Nancy Hancock and Gabriela Crespi, and their collaborator Professor Peter Crack from The University of Melbourne, complete important pre-clinical trials in animals to take their research a step closer to the clinic.

Foundation Board thanks retiring members

Three long-serving members of the SVI Foundation Board have retired and were recognised for their exceptional contributions at the Foundation Board meeting in November. 

Collectively, the three board members, Brenda Shanahan, Maria Palazzolo and Jim Hatzimoisis, served SVI for more than 31 years. 

“It is bittersweet to bid these loyal Board members farewell after their many years of dedicated service,” says Karen Inge, Chair of the SVI Foundation Board. 

“On behalf of SVI, I would like to thank them for their leadership and friendship through the years. We are happy that they will remain part of our SVI family.”

Brenda has made a tangible mark on SVI since commencing as a non-executive director of the Institute in 1996. On becoming Chair in 2004, she took the visionary step of establishing the SVI Foundation to further strengthen SVI’s long tradition of philanthropy. In her 16 years on the SVI Foundation Board, she always led by example, never shied away from the hands-on duties of a Board member and had a real talent for developing relationships and encouraging donors. 

Karen says it was Brenda’s obvious passion for medical research and her understanding of the importance of supporting talented scientists that inspired her to become involved as a Board member and major donor of SVI. “Brenda has a wonderful way of making you feel like your contribution and support is really going to make a difference,” Karen says.

Brenda will remain an integral part of SVI through her various interests, including the endowment fund she established, the Shanahan Carson Bequest, to support research into cardiac disease. 

Brenda says, “I am very privileged to have been part of the SVI Foundation’s journey, where so much has been achieved to support the outstanding research of our scientists.”

Maria will maintain her active and dedicated work as a Discovery Fund Committee member and Jim will continue to be a wonderful ambassador of SVI and to share his talents and skills as our charity auctioneer. 

Karen says, “We can’t thank Maria, Jim and Brenda enough for everything they’ve done for SVI in sharing their insights, generosity, talents, and skills.”

SVI Support Group steadfast and true

While most of us are happy to volunteer for our children’s school, sports team or local community group for a year or two, it takes real dedication to commit yourself to 31 years of fundraising for medical research.

SVI Foundation Board member Claire O’Callaghan leads the SVI Support Group.

“I set up the Committee with then-Director Jack Martin’s wife Christine and we held our first event in 1989. Sadly, Christine passed away, but she left behind a great legacy.”

In 2005, the Group’s annual event evolved into an annual dinner to provide Top-up Scholarships to support SVI’s Honours and PhD students. Incredibly, since then, their efforts have supported almost 100 students. including 15 students currently undertaking studies at the Institute. 

“Due to the pandemic, this is the first year we haven’t been able to hold an event. Despite this, our Group has been hard at work. Thanks to a number of very generous donations, we are able to continue to support our bright young students in 2021. And you can rest assured, next year’s event is already being planned!” says Claire. “Now, more than ever, the students need our help.” 

Former recipients of SVI’s Top-up Scholarship now work across the world, and some have returned to Australia’s shores after undertaking postdoctoral studies in well-known tertiary and research hubs such as Oxford, Cambridge and Harvard.

2020 Support Group MembersMargaret Batrouney Colleen Bolton Bernadette Dennis Clare Dyer Cathy Gilbert Angela Griss Barbara Handley Carole Hart Dawn Hill-Regan Jo Lonergan Sally Moore Genny Nunan Claire O’Callaghan Geraldine Peck Anne Prowse Margaret Reeves Judy Ryan Therese Whiting Thecla Xipell

Dr Wilson Castillo-Tandazo, Scholarship recipient

“The Top-Up Scholarship made a big difference in my everyday life. The fact that I could focus 100% on my studies without worrying about having enough money to pay the bills was a big relief. Now that I’ve completed my PhD, I’m working towards validating my overseas medical degree so I can practice medicine here in Australia. My long-term career goal is to improve not only the treatment, but also the quality of life of children with cancer. Your support helped me to make discoveries that could benefit patients, and also helped me to become a researcher with skills that will be useful for the rest of my career.” 

Fundraisers raise the bar

Monique Cambrey-Young is one of SVI’s impressive grass-roots fundraisers. During Melbourne’s lockdown, Monique set about making and selling face masks in support of SVI’s type 1 diabetes research. She has so far raised $250 through her efforts. 

Deb Bayley, whose son Ryan has type 1 diabetes, runs the Facebook pages T1D Advocates for change, and T1D Cards for a Cure. A very effective type 1 diabetes advocate, Deb has registered SVI to participate in the Ritchies Community Benefit Card Program. If you would like to donate through Ritchies, join the Ritchies Card program and nominate SVI as your chosen charity. 

Thanks to Deb and Monique for their outstanding support and dedication to our type 1 diabetes research program. 

A lifetime of giving back

Joan Chappell regards the 4 years she spent as a young nurse at St Vincent’s Hospital Melbourne as among the happiest of her early life. 

“People say that school is the best time of your life, but for me it was my nursing days, I absolutely loved it,” Joan says.

Joan began her training at the hospital in 1955, where, upon graduation, she worked as a theatre nurse.

“It was marvelous as we were right in the thick of things in the operating theatre,” Joan recalls. “I was inquisitive and really wanted to know how bodies worked, so I loved it.”

Not long into her nursing career she met her husband, the late Jock Chappell, who is a former Chair of SVI’s Board. The couple went on to have 5 children over the course of their long marriage, including a daughter who followed in Joan’s footsteps and worked as a nurse at St Vincent’s Hospital.

“I’m so lucky that I have 5 healthy children and 14 healthy grandchildren,” she says. “It is quite the blessing.”

While Joan never formally returned to nursing after she had children, her connection to St Vincent’s Hospital and SVI strengthened over the years.

For many years, Joan and her husband lived close to Jack Martin, SVI’s director from 1988 - 2002, who was renowned for bolstering the Institute’s focus on cancer and bone research. 

Jack managed to convince Jock, who was by that stage the CEO of UniSuper, to join the Institute as the Chair of the Board. Jock, a qualified actuary, was in his natural element as a board leader.

Joan also devoted her energy and time to SVI, joining the SVI Support Group, which helps raise money to support medical research through an annual dinner.

Even after Jock passed away from dementia in 2008, Joan remained active within the group, determined to fulfil her and her late husband’s commitment to philanthropy, which is informed by a deep sense of social justice.

In addition to regular annual donations, Joan has left a bequest in her Will so that SVI’s medical researchers can continue to make headway in the treatment and cure of our most common diseases.

“Medical researchers discover wonderful things and I think if you can afford to support it, you have an obligation to do so,” Joan reflects. “I’m very privileged, I live comfortably, and so I believe I need to share that with people.”

For more information or a confidential discussion about making a gift to SVI in your Will, contact the SVI Foundation on (03) 9231 2480.