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MSWA Bulletin Magazine Spring 2020

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Support coordination | Mindfulness for beginners | Camps are back! | Outreach news

CAMPS & RECREATION CAMPS

CAMPS & RECREATION CAMPS ARE BACK! DAWN BURKE COORDINATOR – CAMPS AND VOLUNTEERS MSWA Camps are back! And what a program we have. Hello, and let me introduce myself to those who don’t know me. I am Dawn Burke, Camp Coordinator. I have been working for MSWA as a Volunteer Coordinator for nine years and have been privileged to attend many camps since I started here. Until recently, I supported our lovely Sumit, the previous Camp Coordinator, who has spread his wings and left the nest. For those of you asking after Sumit, he is doing well and misses you all, and I have taken over the reins. Once some COVID restrictions lifted, it was pedal to the metal organising some much-needed, if slightly different getaways, for our Members, their families, and carers. The MSWA camps are funded through Lotterywest. We attended two camps in September, and two Carer Retreats and a South West Members’ camp in the weeks that followed. A few Members recently enjoyed a stay at our Treendale Gardens Respite facility, in Australind. The group was smaller than usual but just as much fun. It was a safe way to reintroduce camps with limited numbers and a great opportunity for them to see what Treendale is all about should they need respite in the future to provide relief to family or a break from routine. Treendale is such a beautiful facility and the staff were definitely ‘all hands on deck’. Treendale usually takes six guests at once, but we stretched them to nine by utilising the adjoining family holiday unit. I would like to say a huge thank you to the support staff, coordinator, and management, for stepping up to the challenge and making this work for our Customers, it was truly appreciated. One of the camp activities organised was a visit from the local FESA station. They discussed safety in the home and ideas on how to be fire smart and keep yourself safe. We checked out their fire engines, which had amazing Aboriginal artwork on the side panels. It certainly was a great way to spend the morning. 24

The second camp was our annual Family Camp at the Woodman Point Department of Recreation site. We had great numbers with 16 children and 15 adults. There was so much going on around the place and the kids clicked together straight away. It was lovely to see some families returning and to have new families attend, experience holidaying together, and take part in activities they ordinarily may not have the opportunity to. This year we were exceptionally lucky to have some of our activities funded through money raised directly by Western Australian participants in the MS Readathon. The kids had so much fun. To be honest, so did the adults. We went on the much-loved flying fox, climbed the rock wall, shot arrows in the archery field, and spent a few hours playing at the beach (pictured). After dinner, the volunteers took the children out to play ‘spotlight’, always a favourite for the kids. Darkness and a torch, what more do they need? Family Camps are for parents and their children, from kindy through to Year 6. If you have a child in this age range, why not call and have a chat? Your other children are welcome, as long as one of them fits the above criteria. Parents are ultimately responsible for their children and MSWA will provide the activities, food, and accommodation. What a great way to spend three nights away with your family, get to know other parents living with MS and for your children to know they aren’t on their own on this MS journey. The following dates have so far been secured for early next year. Carers Retreat, Monday, 15 March 2021 – Rottnest Island Members Camp, Monday, 12 April 2021 – Woodman Point Recreation Centre For anyone interested in attending a camp, please contact me on 9365 4843 or dawn.burke@mswa.org.au. I look forward to seeing you at our next camp experience. MEDICATION UPDATE Australian Government approves PBS listing of Siponimod (Mayzent ® ) for secondary progressive MS On 25 October 2020, the Federal Health Minister, the Hon Greg Hunt MP, announced the listing of siponimod (Mayzent) for the treatment of secondary progressive MS (SPMS) on the Pharmaceutical Benefits Scheme (PBS), from 1 November 2020. The Pharmaceutical Benefits Advisory Committee (PBAC) recommended the listing of siponimod (Mayzent®) for patients with SPMS who are ambulant (with or without support). This PBS listing was recommended by the independent expert PBAC and is the first time in Australia that a medicine has been listed on the PBS specifically for the treatment of SPMS. People living with SPMS should discuss any potential treatments with their neurologist or MS nurse. Please consult your neurologist to see if siponimod (Mayzent®) is the right treatment for you. Decisions about treatments, taking into consideration the potential benefits and side effects for your individual circumstance, should be made in careful consultation with your treating healthcare team. 25