MS Research Flagship
Newsletter

The MS Research Flagship
The MS Research Flagship is a Flagship program of the University of Tasmania, College of Health and Medicine and was established from a long history of multiple sclerosis (MS) research at the Menzies Institute for Medical Research. Menzies has proudly been at the forefront of research advancements in MS for over twenty-five years. 

Dr Kalina Makowiecki at Research with Connections

Research with Connections
To recognise and celebrate World MS Day 2021, our MS Research Flagship hosted their first-ever Research with Connections event on the 28th of May at Blundstone Arena.  

This year's World MS Day theme was ‘Connections.' A global theme for three years (2020 – 2022) that aims to build community connection, self-connection, and connections to quality care.

The Research with Connections event was organised by the MS Research Flagship to bring the multiple sclerosis (MS) community together, showcase vital research, and highlight the importance of community connections. 

“Communication and connections between researchers and the MS community are vitally important to ensure that the research is relevant, meets the priorities and needs of the community, and is ultimately translated into outcomes that improve the lives of people living with MS. Events like Research with Connections provide the opportunity to establish, strengthen, and foster these connections in the spirit of a true partnership,” said Vivienne Jones, Consumer and Community Engagement Manager.

Over 120 members of the Tasmanian MS community attended the event to watch presentations on several research topics – from gene hunting to magnetic brain stimulation. There were also presentations focussing on consumer and community involvement and a special guest presentation from Heather Francis, CEO of the Royal Hobart Hospital Research Foundation. 

The event was expertly chaired by the President of MS Australia and Chair of the Consumer and Community Reference Committee (C&CRC), Associate Professor Des Graham. Our researchers and MS partner organisations also provided additional opportunities for involvement throughout the day at their trade tables.

With 2022 marking the final year of the 2020 – 2022 World MS Day ‘Connections’ theme, the MS Research Flagship is already making plans for next year’s event.   

If you missed out on Research with Connections, you can watch the presentations here: bit.ly/2TXpuE1.

May 50K
The MS Research Australia May 50K is a rewarding and community-driven fundraising event that occurs in a month dedicated to multiple sclerosis (MS). 

The May 50K asks participants to leave their limits behind by walking or running 50 kilometres in May to raise money for life-changing research into MS.  

For 2021, our team consisted of 16 people from the University of Tasmania's College of Health and Medicine, the Menzies Institute for Medical Research, and the MS Research Flagship. These committed team members jumped at the opportunity to pledge their quads, calves, hamstrings, and glutes to the May 50K cause.  

After 31 days of running and walking, they raised over $10,000 for vital MS research. They also came 15th out of 500+ workplace teams and 2nd in the workplace sector ranking. With competing workplaces like Merck, Coca Cola Amatil, Australian Clinical Labs, and MS Research Australia taking part in the challenge, they did a tremendous job placing in the top 20.  

For their challenge, MS Research Flagship Program Manager Natasha Stevens and Consumer and Community Engagement Manager Viv Jones walked the Three Capes Track - nearly 50 km over four days. There was also an honourable mention for Dr Ashish Mehta, who recorded over 240 kilometres!  

The May 50K is a major fundraising activity that brings people together and supports research right across Australia. The Menzies Institute for Medical Research and the MS Research Flagship are proud to participate and do our part to raise funds to stop and reverse MS.  

Program Manager Natasha Stevens and Consumer and Community Engagement Manager Viv Jones on the Three Capes Walk

Tasmanian Multiple Sclerosis Healthcare and Support Service Access Study

If you are a person living with multiple sclerosis in Tasmania, we want to hear from you!

Our Tasmanian MS Healthcare and Support Service Access Study will explore the ability to access healthcare and support services among Tasmanians living with MS.

To complete the 30-minute survey, follow this link: bit.ly/36i6cvQ.

For more information, please contact Dr Suzi Claflin on 03 6226 7728 or email suzi.claflin@utas.edu.au.

Understanding MS 2021
Over 20,000 people from more than 130 countries have taken part in our Understanding MS free online course since it started in 2019!

The next Understanding MS course is just around the corner and starts on September 13th.

If you haven’t already enrolled in the course and want to join the thousands of people from around the world learning about MS, you can sign up here: https://ms.mooc.utas.edu.au/.

MS Researcher, Mr Barnabas Bessing

Researcher Spotlight: ​Barnabas Bessing
Barnabas is a member of our MS Research Flagship, but medical research wasn't his first calling. From 2004 to 2018, Barnabas worked as a registered nurse, public health nurse, nurse educator with Ghana health services, and a field epidemiologist with the World Health Organization.

He then began his research career with us in December 2018 and has focused on understanding the factors associated with work productivity in people living with MS and increasing knowledge of MS through education.

MS has a wide range of symptoms that impact the quality of life of people living with MS. Most people living with MS in the workforce would love to continue with their jobs, remain productive and contribute to their families and society. However, changes in MS symptoms, lifestyle, employment, and work environment reduce the work hours of people living with MS and consequently compel some to change roles or leave the workforce (voluntarily or involuntarily). Using data from participants of the Australian MS Longitudinal Study (AMSLS), Barnabas wants to unearth issues affecting work productivity for informed decision-making and policy interventions to help people living with MS retain their jobs and stay productive.

Barnabas recently published research on how MS symptom changes can affect work productivity, the work productivity pathways for Australians living with MS, and the development and psychometric properties of an MS knowledge assessment tool. He is currently looking at how environmental and difficulty factors affect productivity at work for people living with MS. This also includes analysing the impact of MS symptoms and workload on disclosure of MS status, the need to change work role/environment, and intention to leave the workforce.

It was his love of medical research and a keen interest in MS derived from his nursing training that drew Barnabas to the MS Research Flagship. The opportunity to be part of a team looking for solutions to issues around MS has been a highlight of his long and diverse career so far.

Consumer and Community Involvement in Research Workshop
In June, members of our C&CRC attended a workshop hosted by the Western Australian Health Translation Network Consumer and Community Involvement Program. This workshop focused on the importance of consumer and community involvement (CCI) and what best practice looks like.

Hosted at the Old Woolstore Hotel, the workshop took a deep dive into the foundations of CCI and the research environment, the role of the C&CRC, the difference between involvement, participation, engagement, and collaboration in research. The C&CRC reflected on their many achievements to date as well as opportunities for the future

The C&CRC had the opportunity to review some recent plain language summaries from grant applications submitted by the MS Research Flagship. They also heard from Dr Julie Campbell, who discussed the study of supporters of people living with MS currently under development, and how CCI will be implemented in that grant.

Members of the C&CRC attending the Western Australian Health Translation Network Consumer and Community Involvement workshop

Awards & Accolades
- A/Professor Kaylene Young awarded the Australasian Neuroscience Society Medal for service 2020.

- Mrs Viv Jones, awarded the Menzies Professional Staff award for Consumer Involvement in Research, 2020.

 Associate Professor Kaylene Young

Consumer and Community Engagement Manager, Mrs Viv Jones

Consumer and Community Reference Committee Member, Mrs Jayne England

Community Corner: Jayne England
Jayne England was just 27 when a pain in her lower back developed into numbness on her left side. Her chiropractor sent her straight to the doctor where a scan revealed lesions on her brain. 

“They thought I’d had a mini stroke or MS. My symptoms worsened, so I was sent to hospital where I had a series of tests and an MRI. Within 48 hours, I had my diagnosis.” 

Jayne was already married and a mother of two small children – Joshua aged four and Kayla aged two. She didn’t know what this meant for her family’s future. 

“I felt numb, scared and in denial. Surely this can’t be happening to me?” 

Nine years on and Jayne plans her days around her health and symptoms. It is hard to function on days when she is struggling with fatigue, constant pain, and insomnia. Even hanging out the washing and preparing dinner can take hours as she cannot stand for long periods and needs to rest.

Help from her family has enabled her to raise two wonderful teenagers. It also helped run her own successful business and become a determined advocate and active fundraiser for MS services, support, and research.

Jayne now sits on the Menzies Consumer and Community Reference Committee. She is also the Chair of the TAS MS-Community Engagement Council, which consults and advises on issues affecting people with MS. This involvement has allowed her to see first-hand the incredible research being done into MS, including its possible causes, treatments, and improvements in the management of the disease. 

Looking to the future, Jayne hopes for a cure. Until that time comes, she will continue to do what she can to make a difference for others living with MS.