RESEARCH OUR COMMUNITY

RESEARCH OUR COMMUNITY DON’T BE AFRAID TO PUT YOUR TWO-PENN’ORTH IN JULIE’S CORNER MSWA Client Nicolette Murphy Nicolette knows that her participation A special legacy will forever live is currently taking part in Edith can help researchers develop new, on at MSWA Rockingham, with a Cowan University's Systematic or further existing, treatments for WA family generously donating Profiling in Neurological Conditions neurological conditions. their late wife and mother’s (SPIN) trials in Perth, and took the time to share her experience with our Bulletin readers. During various trials, Nicolette may undergo physical tests that evaluate her balance and curated collection of craft supplies to our Outreach Clients. The donation was so large that For over a decade, Nicolette coordination, as well as cognitive our Facilities Team purpose-built Murphy has been living with tests that require her to solve a new shelving unit to store the multiple sclerosis (MS) and has problems and puzzles. Nicolette sheer number of machines, papers, made it her mission to live her life finds the cognitive tests enjoyable, buttons, beads, glitter and just to the fullest. Initially experiencing with one such example only about every other item a crafter loss of fine motor skills in her requiring 11 minutes of her time, could ever dream of. hands and feet, making domestic activities difficult, Nicolette has faced numerous challenges since receiving her diagnosis. Despite these obstacles, she has approached life with courage and positivity. When she learned about Edith Cowan University’s Systematic Profiling in Neurological Conditions (SPIN) trials in Perth, she knew she had to be a part of it. Translating research into practice, this multidisciplinary team is identifying markers in individuals that will assist with developing and delivering targeted therapeutic interventions for stroke, Huntington’s disease, Parkinson’s disease and MS. Ultimately, these researchers aim to improve quality of life and outcomes by providing evidence-based information and application. Nicolette has been following the progress of the study and is thrilled to be actively engaged in the research. without a weekly commitment. Nicolette participates both on-campus and from home during the trials. Nicolette values the excellent support provided by the researchers throughout each trial, as they are always available to answer her questions and offer reassurance. She encourages other participants to voice their opinions, as every consumer has a valuable perspective. “Don’t be afraid to stand up and put your two-penn’orth in,” she said, “everybody’s got a voice and it is always valid because we are the consumer.” At the end of each trial, Nicolette feels a sense of pride and accomplishment. She knows that her participation has contributed to a better understanding of MS and its progression, which has the potential to change the lives of those living with MS. Nicolette using the blue light therapy glasses from the ENLighTIND Trials. “My favourite part about participating in the trials is that it’s all about me, for me and people like me,” Nicolette said. As the trials do vary, Nicolette recommends that those interested attend an initial conversation with researchers to determine which trials may be suitable for them. Nicolette also noted that her energy levels tend to drop after her participation. For those interested in participating, keep an eye out for our Vitality newsletter, which will feature current research trials. ‘Julie’s Corner’ now resides proudly at the centre, with Julie watching on from the top shelf to inspire our Rockingham crafters with their projects. The new set-up was unveiled at a special morning tea in March, attended by Julie’s husband Laurie and son Mitch. “She was a really special lady. For her, craft was something she really enjoyed,” Mitch Brown said. “It’s great to come to Rockingham to see how beautifully it is set up, but also just to hear the Clients talk about the things they will be able to do with it all.” “It’s amazing, it’s really what she would have wanted – to see people get that same enjoyment out of it is really special.” To honour Julie, our Rockingham Outreach Clients carefully decorated the letters spelling out ‘Julie’s Corner’ using the gifted supplies. “My dad has brought a photo of Julie to put up there which is really nice, and to see her name up on the wall, it means a lot,” Mitch said. “I think it is something that took my dad a while to come to terms with – what he was going to do with her things – but it is great to give it to someone who will get the same appreciation out of it.” “I would encourage others to think about giving a second life to the things their loved ones have left behind.” MSWA Client Teresa McCutcheon has attended Rockingham Outreach for close to a decade and had never heard of anything “quite so amazing” as this donation. “It arrived in bits and bobs, and we thought we would get a few boxes,” she said. “We would open them and think ‘wow, that’s amazing’ and then more and more would turn up,” Teresa said. “A few of us are real keen crafters, so my craft stash envy is strong! Seeing Julie’s picture on the wall, she was an ace in the ‘stash’ building game, and absolutely my idol that I aspire to.” “I just can’t thank Laurie, and his sons Mitch and James enough, because I don’t think they are ever going to get an inkling – we don’t probably even have an inkling ourselves – of just how much it is going to mean to us going forward.” MSWA extends our sincere thanks to Laurie, Mitch and James for their kindness and generosity. We know our Client crafters will never take this blessing for granted. For the latest information on the research projects MSWA funds, please visit mswa.org.au/news-research/commitment-to-research 10 11