Impact Magazine Issue #64 - Research Update | Wesley Medical Research

IMPACT

WMR RESEARCH UPDATE ISSUE 64 AUTUMN 2019

TOP STORY

IN THIS ISSUE

03

You have changed Adelaide’s life

04

Understanding the impact of neurodegenerative conditions on sleep

05

Biobanking: Connecting science and medicine

06

Global leader in coeliac vaccine trial

YOU HAVE CHANGED ADELAIDE’S LIFE After taking a drop of blood and waiting ten minutes, you helped give Adelaide a clear result.

Louise, Adelaide’s mum, couldn’t be happier for encouraging her daughter to participate in a clinical trial to test a new diagnostic tool for coeliac disease while the family holidayed in Brisbane...

READ MORE ON PAGE 3 1 RESEARCH UPDATE

HELPING TO FIND ANSWERS FOR MOTOR NEURON DISEASE PATIENTS A NOVEL ANTIBACTERIAL TREATMENT TRIAL Motor Neuron Disease (MND) is a fatal neurodegenerative disease where the nerve cells that enable us to move, speak, breath and swallow slowly fail to work normally.

In 2009, Glenn began to lose motor control in his right hand, which was put down to nerve damage from a motorcycle accident. Symptoms worsened over the subsequent years, and Glenn was diagnosed with Motor Neuron disease in 2013.

Life expectancy for Motor Neuron disease is just two and a half years, so every day is a blessing for Glenn and his family.

Glenn and his wife Sue travel to Brisbane regularly from their home in Gympie to participate in two clinical trials at Wesley Medical Research that each look at different areas of Motor Neuron Disease. “I’m enrolled in as many trials as I can.

The more trials that can be done for people with this disease, the closer we can get to better treatment or

even a cure. Even if this particular trial doesn’t find the answer, it may find a link to something, and that’s worth it in my book, “said Glenn.

Glenn has just completed a trial testing the impact of squalamine on disease progression. There is emerging evidence suggesting the gut microbiome and toxin levels play an essential role in the disease progression.

“Squalamine is a natural antibiotic that in preliminary evidence, has shown to target bacteria that produce toxins. In reducing these toxins, we hope to slow the disease progression,” said Professor Pam McCombe.

Both Glenn and Sue expressed their gratitude for the opportunity to be part of research projects that may uncover answers for sufferers of this debilitating condition. “Without donors and funding, the process of finding a cure would be much slower, that’s for sure,” said Glenn.

This research was made possible through the generosity of The Brazil Family Foundation, The Albrecht Foundation and an anonymous donor.

Sue and her husband Glenn, on his final appointment for the Squalamine Trial.

The more trials that can be done for people with this disease, the closer we can get to better treatment or even a cure.

There is still more important work to be done around Motor Neuron Disease. Please donate to help patients like Glenn.

DATE CLAIMER

UNLOCKING THE BRAIN ADVOCATES – THURSDAY 4TH APRIL Dr Richard Gordon and Dr Frederik Steyn are focused on understanding the critical mechanisms in controlling the brain for Parkinson’s and Motor Neuron Disease.

Join us to hear from these trailblazing researchers to understand the impact these projects will have on patients in the near future. ¡¡ Dr Richard Gordon has uncovered a disease-modifying treatment for Parkinson’s Disease ¡¡ Dr Frederik Steyn is controlling appetite targets in the brain to slow progression for MND patients.

Limited seats are available 2 RESEARCH UPDATE

Time: 5:45 pm for a 6:00 pm start 7:00 pm light refreshments Register Online: wesleyresearch.org.au/unlock or call us on 07 3721 1774 Location: Wesley Medical Research Jon Douglas Auditorium Level 8, East Wing, The Wesley Hospital, 451 Coronation Drive Auchenflower Q 4066

YOU HAVE CHANGED ADELAIDE’S LIFE Nine year old Adelaide was one of 280 patients who participated in a clinical trial to determine the accuracy of a pin-prick method of testing for coeliac disease at Wesley Medical Research.

“This test has changed our lives. By participating in this trial, we received a positive pin-prick test and study result for Adelaide. This caused us to investigate further and thankfully we did,” Adelaide’s mother Louise said.

“Without this initial test, we wouldn’t have done an endoscopy and she would not have been diagnosed so early,” said Louise. Adelaide’s gastroenterologist acknowledged there was significant damage to her small bowel from undiagnosed coeliac disease. The internal damaged sustained will take Adelaide 12-18 months to recover.

“And now she is on her way to better health,” finished Louise.

Adelaide is not alone. It is estimated that 350,000 Australians have

coeliac disease, with the majority remaining undiagnosed. The disease can potentially cause damage to multiple parts of the body, not just the bowel which is commonly thought. Left untreated it can increase a person’s risk of developing lymphoma, infertility and osteoporosis.

Louise, Adelaide’s mum, was diagnosed with coeliac disease 9 years ago. The strong genetic link in coeliac disease means that immediate family members have an approximate 1 in 10 chance of also having the disease, with daughters of affected parents being the most likely.

This research aims to validate a simple test using a pin prick of blood which can provide a quick result as to whether people need to go and have further tests for coeliac disease. Studies have shown there is often a delay in diagnosis for those presenting with symptoms of coeliac disease of between three and thirteen years.

This is not simply a case of GPs ignoring the condition; coeliac disease has symptoms which are similar to many other health issues

and can be hard to spot. A large number of people with the disease may also not present as they feel well, but don’t understand they can still be suffering from significant unrecognised harm to their health.

“The impact of this technology could lead to a simpler, faster diagnosis– an important step in a timely and accurate diagnosis,” said lead researcher, Dr James Daveson, “We are so grateful that we could be part of the trial” said Louise.

Results from this research will be available later this year.

This research was made possible through the generosity of our donors and The Thorsen Foundation.

Our pipeline of coeliac disease research still needs funding.

Your support will help find answers for people like Adelaide.

This test has changed our lives. By participating in this trial, we received a positive pin-prick test and study result, which caused us to investigate further and thankfully we did.

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ISSUE 64 | AUTUMN 2019 3

COUNTING SHEEP SLEEP YOU’VE HELPED US UNDERSTAND THE CONNECTION BETWEEN SLEEP AND NEURODEGENERATIVE CONDITIONS The quality of our sleep has a huge impact on our everyday life. It not only affects how we get through the day, but in the long term it also affects how we fight infections, the way we eat and use energy, and also how we store memories and react to what happens around us.

For many of us, a broken night’s sleep results in a grumpy disposition and a desperate need for coffee, but for people suffering from neurodegenerative conditions like Huntington’s disease and Friedreich’s ataxia, broken and disrupted sleep can not only

become the new normal, it can also exacerbate the condition.

Friedreich’s ataxia and Huntington’s disease are two inherited disorders for which there currently is no cure. While considered primarily neurological, we now know that the range of symptoms is broader and that non-neurological symptoms might develop some time before the disease is apparent or diagnosed.

Lead Investigators Associate Professor John O’Sullivan and Dr Susanna Mantovani have completed research to understand the sleep and circadian cycles in a group of Huntington’s disease and Friedreich’s ataxia patients.

“A novel approach for this study was the use of portable machines to measure sleep patterns. Patients were able to use the machines from home, so the results were

more reflective of their usual sleep environment and more disabled patients were able to access the study,” said A/Prof John O’Sullivan.

The research has acknowledged these patients have significant sleep abnormalities, with both groups waking up later in the day and having less exposure to light in the morning, and Friedreich’s ataxia patients having less exposure to light for the rest of the day.

“We are working towards developing new tools for assessing these conditions. It is hoped that if we can manage the sleep disturbances, we could alter progression of the disease,” said AProf John O’Sullivan.

This research was made possible through the generosity of The Thorsen Foundation.

Further research is needed to develop new ways to manage neurological conditions. You can be a part of the solution. Donate today.

Huntington’s disease and Friedreich’s ataxia are two devastating and terminal neurodegenerative conditions.

No cure is currently available for either inherited disease, resulting in deep frustration for the patients, their families, and treating health carers who are left with only symptomatic treatment options.

4 RESEARCH UPDATE

Effects of sleep and circadian alterations on human physiology

GIVING CHRISTINE THE GIFT OF SLEEP THE CHANCE TO BE A TRIAL PARTICIPANT Christine Payze, 71, was diagnosed with Parkinson’s disease in 2011 and began experiencing insomnia around 2015.

“My sleep has definitely taken a turn for the worse. I was always pretty good, and would sleep through most nights. But now I will wake, and I’m alert and can’t get back to sleep, almost every night. It makes the days that much more difficult.”

Christine is about to start on the ‘Melatonin for Insomnia in Parkinson’s Disease’ trial that will help to determine whether melatonin should be included in treatment plans for Parkinson’s disease patients who suffer from sleep disturbances.

“I was advised by my GP to try melatonin, and then heard about this clinical trial through Parkinson’s Queensland,” said Christine. “It was perfect timing, and being part of the clinical trial means that my experience will contribute to an answer, and help other people with Parkinson’s disease.”

Studies have found that there is a reduction in the release of melatonin for Parkinson’s patients, which has a link to the two thirds of Parkinson’s disease patients who suffer from sleep disturbances.

Sleep disorders often cause major discomfort in Parkinson’s disease.

Not only is the person’s health and quality of life affected, but so are their family members’, especially if they are also carers.

We need your help to encourage anyone with Parkinson’s disease

Chris Payze enjoying time with her granddaughter Sophie

who also suffers with insomnia to register their interest via our website or complete the form on the following page.

Register your interest for this clinicalt trial at www.wesleyresearch.org.au/parkinsons

MAKING THE CONNECTION BETWEEN SCIENCE AND MEDICINE WITH YOUR SUPPORT WE ARE SPEEDING UP DISCOVERIES THAT TRANSLATE INTO BETTER PATIENT CARE For breakthroughs in cancer, autism and rare genetic disease, the Wesley Medical Research Biobank is playing a significant role. High-quality researchers depend on our Biobank to access human specimens that will be used to identify improvements in detection, diagnosis and treatment of diseases.

Holding 30,000 samples, this highly specialised facility offers long-term protection and storage for the Queensland Brain Tumour Bank, the Australian Autism Biobank and the Justin Cameron Sarcoma Collection.

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Currently, the Biobank is providing samples to advance single drop diagnostics that will identify if patients have active cancer cells.

One drop of blood contains a massive amount of information, millions of cells, trillions of small molecules like proteins, nucleic acids and ions. With your support, we have been able to provide these researchers with vital samples to develop this technology.

This month, our facility has stored 4611 samples that will be used to facilitate earlier and more accurate diagnosis of autism.

These small samples will play a critical role in advancing diagnostics and clinical care.

GLOBAL LEADER IN COELIAC VACCINE TRIAL PATIENTS LIKE ADRIAN HAVE HELPED WMR LEAD THE WAY Adrian was ecstatic when he learned he would be the first person screened for the Nexvax2 clinical trial being undertaken at Wesley Medical Research. “I was already excited to learn about the potential for this vaccine and being first on the trial here made it even more so.”

“It’s exciting to know that I am a part of something that, if my girls are diagnosed, could make a huge difference to their lives.”

Wesley Medical Research is a lead recruitment site globally for the vaccine trial for coeliac disease.

Adrian has been dosed with the vaccine for the last couple of months and the future impact of this vaccine has not been lost on Adrian.

Recruitment for this trial at Wesley Medical Research has now closed, however there will hopefully be opportunities for involvement in future trials.

“Hopefully, if successful, this vaccine could be the first real therapy for coeliac disease other than a strict gluten free diet, with all that entails when trying to live a normal life,” said Adrian.

We will need volunteers for future clinical trials in coeliac disease.

“I have two young daughters, who have a much higher risk of developing coeliac disease in the future.

If you’re interested in participating in coeliac research, please register your interest via our website: wesleyresearch.org.au/coeliac

I was already excited to learn about the potential for this vaccine and being first on the trial here made it even more so.

CELEBRATING 27 YEARS OF THE JUSTIN CAMERON CANCER CARE FOUNDATION After their son Justin lost his battle in 1990 with Ewing’s Sarcoma at the age of 16, his parents Rhonda and Alan Cameron created the Justin Cameron Cancer Care Foundation to secure a meaningful legacy from their immeasurable loss.

The Foundation has been collaborating with Wesley Medical Research and is providing funding to maintain the Sarcoma Collection for the next 10 years.

The collection currently holds 720 human samples (blood and tissue) of sarcoma, a critical resource to understand the disease.

On January 10, the JCCCF committee members joined to celebrate and acknowledge the Foundation’s contribution to advancing national and international knowledge into aggressive bone and

6 RESEARCH UPDATE

Head of Fundraising for JCCCF Brian Kerle and Rhonda Cameron visit the WMR Biobank.

soft tissue cancers. This foundation has built a network of like-minded and passionate people, who when combined have an incredible strength.

Thank you to Rhonda Cameron and the Justin Cameron Cancer Care Foundation Committee for continuing to support this important resource.

Justin Cameron Cancer Care Foundation Committee.

Biobank samples are the key in providing a pathway to better health and medical research, delivering answers to our biggest research questions.

Help us build our WMR Biobank resources by donating.

HOW YOU CAN HELP SOMEONE LIKE ADELAIDE. YOUR SUPPORT WILL IMPACT PATIENTS LIVES TODAY. In Memory of Beryl Cameron

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We’d like to convey our deepest condolences and sincere gratitude to the family and loved ones of Beryl Cameron. Beryl was a significant fundraiser for the Justin Cameron Cancer Care Fundation and truly believed in advancing research to benefit patients.

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Following is a list of 2019 events that offer you the opportunity to fundraise for WMR and luckily for most of us, each event offers alternatives for all fitness levels. Let’s get moving.

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TOUGH MUDDER 19–20 May 2018 South East Queensland GOLD COAST MARATHON 6–7 July 2019 Gold Coast, Queensland THE SUNDAY MAIL BRIDGE TO BRISBANE DAY 25 August 2019 Brisbane, Queensland SUNSHINE COAST MARATHON 2–4 August 2019 Sunshine Coast, Queensland NOOSA TRIATHLON MULTI SPORT FESTIVAL 30 Oct – 3 Nov 2019 Noosa, Queensland 7 RESEARCH UPDATE

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JOIN A CLINICAL TRIAL TODAY! Both healthy participants and those diagnosed with a disease or condition are needed to help find new ways to prevent, diagnose, treat or cure disease and disability. If more people are involved in clinical trials, it may reduce the time it takes to make new interventions widely available.

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