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APRIL 2022
THE OFFICIAL SUPPORTER NEWSLET TER O F M U LT I P L E S C L E R O S I S S O C I E T Y S A & N T
MS SOCIETY SA & NT
CALL 08 7002 6500 ms.asn.au
Empowering people to live well. Supporting research.
FIGHTING MS: JORAM’S STORY Joram is a lover of the outdoors, so when he was diagnosed with MS, he started to think about what this diagnosis could mean for his future. Would his condition progress to the point that he wouldn’t be able to go out camping, fishing and scuba diving anymore? The diagnosis happened very quickly and without warning. He went to the doctor with tinnitus in the ear. It was by mistake that the doctor found the diagnosis of MS at all – what they thought was a spot on the ear drum turned out to be a lesion in the brain. Joram says that while his symptoms are quite mild, every day he thinks about what this could mean for his future and the impact it could have on the things he loves to do. He loves the outdoors and being in the water. The heat exasperates Joram’s fatigue which started to affect his work. Working in aircraft maintenance, means that his job requires working eight hours a day out on an aircraft in a physically demanding role. “I knew throughout the years it would get worse and worse. So, I went from that position into a planning position in the office. It’s airconditioned
so it’s a lot more comfortable. It’s about staying out of the heat and keeping your core temperature cool,” Joram says. Joram says that he is so grateful to have received support from his family, friends, doctors and the MS Society to cope with the diagnosis and he really wanted to do something to give back to others who are also living with this disease. Over two months and 10,000 kilometres, Joram and his mates Leo and Shaun travelled through central Australia and Queensland with just their motorcycles on the adventure of a lifetime, raising over $11,000 for the MS Society towards services for people living with MS. Joram, Leo and Shaun have been planning to take on this challenge since 2020 when they had originally planned to ride their motorcycles across the
USA. Unfortunately, the unprecedented events of COVID-19 saw their plans come to a crashing halt. A year went by and going overseas still seemed so far into the distance – so they decided to take on their own home country instead. They set out in September, leaving from Adelaide, riding all the way up central Australia to Darwin, and around the coast to Southern Queensland. “We’ve dropped bikes, broken bikes, been hit by kangaroos, had our ankles nipped at by snakes and crossed some of the most rugged land our country has to offer and we still can’t take the smiles off our faces.” “The kindness and generosity of people as we’ve crossed our beautiful country has been beyond belief. Thanks so much for the donations and support, it means a lot as we continue the battle against MS.”
Tim Ryan Chief Executive Officer
Note from the CEO
World MS Day is held each year on the 30 May and this year the theme is connections with community. The aim of the campaign is to challenge social barriers and stigma that can leave people affected by MS feeling lonely and isolated. Our connections with family, friends and the community are important for our mental health and emotional wellbeing. Connecting with the community provides us with a sense of belonging and purpose.
It also makes us feel happy, secure and supported. For some people with MS, symptoms like bladder and bowel issues, fatigue and mobility can impact their ability to get out in the community. That’s where support from specialist healthcare professionals is really vital. People with MS can work with a physiotherapist to improve symptoms like fatigue and increase their strength and mobility. A continence nurse can provide advice and strategies to manage bladder and bowel issues.
A social support coordinator can connect a person with MS with the right funding and support, so they can access the services they need, when they need them. Our MS Nurses have also been a crucial support to people living with MS throughout the entire pandemic, always at the end of the phone when our clients have questions about the COVID-19 vaccine, their MS treatments and to discuss worries they have about getting back out into the community now that restrictions have eased.
All our services are available through telehealth. This means that people with MS can still connect with our MS nurses, physiotherapists and social support coordinators from their home over the phone or video call. I want to thank you from the bottom of my heart for your ongoing, generous support which ensures that people living with MS have access to high quality service support and expert guidance to help them engage with the community safely and confidently.
Karen has found people who really understand her thanks to MS Peer Support MS Peer Support connects people like Karen with others who really understand their experience, so people with MS don’t have to live with this disease alone. Karen says she knows what it’s like to feel lonely and isolated because of MS. Not because she is stuck at home with symptoms or because she doesn’t have family and friends around her, but because she felt like there was no one in her life who really understood what she was going through. When Karen started connecting with others with MS through the MS Society’s Peer Support program, she found it so invaluable. Through the private Facebook group, she found a safe space to share experiences and ask for advice about MS symptoms. An activity that really helps Karen cope, is crafting, “I love it because if I’m having a bad day,
I can just go down to my craft room, that’s my happy place. Even just half an hour of craft makes me feel better.” When she first started developing an interest in craft, she really wanted to join a group but she felt embarrassed because she’d often drops things, and she worried that she might be slow and hold up the other members of the group. She thought, ‘if I can’t go to a group, I’ll make my own’. Karen formed an MS Peer Support group who all get together to craft – they call themselves the MesSy Makers.
“You’re sitting doing your thing and you’re chatting and having a laugh. Everyone’s having fun. It’s not stressful, there’s no pressure there. You don’t have to be an expert and you can make a mess.”
There are 24 MS Peer Support groups meeting regularly across South Australia and Northern Territory and over 400 people with MS connect daily on our private Facebook group.
Thank you for ensuring that people with MS don’t have to face their MS symptoms alone.
MS Australia contributes $6.9 million for new MS research projects in 2022 With support from people like you, MS Society SA & NT are supporting MS Australia to fund a range of important research projects in 2022. MS Australia have contributed $6.9 million in grants to 26 new research projects commencing in January 2022.
$390,000 Senior Research Fellowship awarded in Adelaide
These important research projects will address causes and prevention, better treatments and cures via repair and regeneration of cells.
three new projects grants that specifically address the repair and regeneration of nerves, a critical step towards treating progressive forms of MS.
MS Australia are doing incredible work in the MS research space, and it wouldn’t be possible without support from people like you.
MS Society SA & NT is very proud to have contributed $640,000 to support three important research studies focusing on developing and testing new treatments and therapies for MS. The MS Society is also co-funding
Each year MS Australia holds a grant round to select only the top MS research projects to fund. This is MS Australia’s largest ever annual grant funding commitment.
For more information about the many important research projects MS Australia is funding in 2022, visit MS Australia’s website on www.msaustralia. org.au
Exciting new MS research by Dr Iain Comerford from the University of Adelaide could identify new ways in which MS may be better treated in the future.
lead to better therapeutics that can interfere with this process.
In MS, cells of the immune system enter the brain and spinal cord and produce substances that cause inflammation, resulting in damage that leads to the disease symptoms. Understanding how the immune cells enter the brain is likely to
Over the next three years, Dr Comerford will be investigating the ways in which inflammatory immune cells called T cells, enter the brain and new ways to block them from entering the brain. The diseasecausing T cells will be examined in more detail in this study. Thank you for helping us support important research like Dr Comerford’s, to help us strive towards better treatments and a cure for MS.
Dr Iain Comerford from the University of Adelaide
MS Physios take part in important exercise and MS research study MS Society physiotherapists are taking part in an exercisebased research study which will help to develop an effective telehealth-based exercise program for people with MS. Project BASE: Changing Behaviour towards Aerobic and Strength Exercise in MS (BASEMS) is a 4-month, at home resistance and aerobic exercise program which people with mild to moderate MS can do. Participants will take part in an online exercise program and receive online coaching calls from an MS Physiotherapist.
The aim of this study is to develop a telehealth-based exercise program for people living with MS following MS exercise guidelines and principles of behaviour change to create long term habits. The study will also create educational resources for health professionals to deliver the program and increase understanding of MS. MS Physiotherapist, Margot Strelan says, “Studies show that exercise helps to reduce the impact of many common MS symptoms including fatigue, pain, balance, muscle weakness, and bladder and bowel function.”
“This research will ensure that people with MS have access to support from trained health professionals to make exercise a regular part of their life and their management plan for MS.” The first round of the BASEMS study is currently taking place with a small group of participants in South Australia.
The study is run by Murdoch University, Western Australia and is funded by MS Australia and the Perron Institute, in Perth, Western Australia. Important studies like this enable us to provide better services to people living with MS and would not be possible without your support.
BRINGING FAMILIES AFFECTED BY MS TOGETHER
Families affected by MS had the opportunity to connect with other families who are sharing their experience at the MS Family Fun Day in September. Thanks to funds raised in the 2020 MS Readathon, 31 families had a great day out at the Beachouse, Glenelg. This is one of our favourite days of the year as it provides an opportunity for kids who have a parent living with MS to spend quality time with their family, learn more about multiple sclerosis and bond with other kids who are sharing their experience. Mindfulness is a great tool in the management of MS and is also something families can do together at home. This MS Family Day the activities were based on some great mindfulness activities families can explore including mindfulness drumming, canvas paint pouring, yoga and meditation. The MS Family Fun Day was in huge demand and booked out in just 24 hours! We are so grateful to the amazing kids who participated in the MS Readathon and made this event possible.
We want to say a huge thank you to all the children who participated in the MS Readathon in August 2021. Funds raised from the MS Readathon will help fund vital support services,
MS Society SA & NT has opened a new office in Brighton, making vital services more accessible for people living with MS in Southern Adelaide and nearby regions. With more than 2,600 clients across South Australia and Northern Territory, we are committed to ensuring that people with MS have access to high quality services and expert guidance. Throughout 2021 our focus was to make our services more accessible for people living with MS. Over one third of our clients live in southern Adelaide and nearby regions. When we announced the opening of our new office in December, we received an outpouring of support from our local clients who are so pleased to have access to specialised services closer to home.
MS Readathon 2021 raises $2.3 million! Locally, children in South Australia and Northern Territory have contributed to almost $190,000 of the national MS Readathon fundraising total.
MS Society opens new location in Southern Adelaide
including our next MS Family Fun Day coming up in 2022! Register your interest now to participate in this year’s MS Readathon at msreadathon.org.au
Our new location in Brighton will offer a range of wellbeing services for people living with MS including MS Nurses, physiotherapy, social support, NDIS support coordination and occupational therapy.
Thank you so much for helping us reach more people living with MS. We couldn’t have done it without you!
CONNECTING WITH US
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