Dystonia Awareness Month was held in September
Centre turns blue for a cause
The following article was published in the Maryborough District Advertiser (Victoria) on the 9th September 2022. We are reprinting the article with permission of the Advertiser and journalist Riley Upton who wrote the article. We would like to give our thanks to the Maryborough Advertiser and especially to Riley for writing with such accuracy about dystonia. We also send our heartfelt thanks to the Goldfields Family Centre and Supported Playgroup for continuing to support dystonia awareness.
“Goldfields Family Centre and Supported Playgroup staff dressed in blue this week for a cause very close to home, marking Dystonia Awareness Month in support of former colleague Wendy Powell. Diagnosed with the rare neurological disorder in November 2020, Wendy’s life was flipped on its head. Her 15-year career at the Goldfields Family Centre came to an end, regular visits to specialists, becoming more reliant on family for daily tasks and adjusting to the changes in her body are just some of the impacts that have followed the diagnosis.
Characterised by involuntary muscle contractions that cause slow, repetitive movements or abnormal postures, dystonia varies in severity and can cause significant pain and discomfort as well as difficulty due to the abnormal postures it causes, impacting quality of life and daily living. The condition can also affect almost any part of the body and can occur in both adults and children.
Goldfields Family Centre coordinator Ben Sweeney said the whole family centre team had rallied around Wendy. “Wendy has been a profoundly important member of the family centre community and also the broader community,” she said. “Wendy has been teaching for a very long time — she’s well known and well regarded and is really important to us. We’re doing this first and foremost to show her that we are here and will always support her in her journey. We also want to raise awareness in the community of dystonia because until Wendy’s diagnosis, nobody here had ever heard of it.”
For the past week, both the family centre and Supported Playgroup have taken part in a host of activities as part of the Dystonia Network Australia’s (DNA) Dystonia Awareness Month. The family centre dedicated Tuesday to a bouncy fun day with plenty of blue themed activities, with staff, parents and children encouraged to dress in blue — the predominant colour of DNA. It follows the centre rallying around Wendy at the same time last year, hosting an online walkathon and raising $4000 for DNA.
Ms Sweeney said it was important the condition was brought into the spotlight during Dystonia Awareness Month. “The whole team misses Wendy — we miss having her here,” she said. “I think it’s really important that everyone at the family centre continue to support her and continue to keep her in the loop as part of our centre community. As part of that, our Supported Playgroup team have had a jumping castle and dressed in blue and did a jump for dystonia every day throughout the week. We had one day where we did that at the family centre and we brought out everything blue we could find — we had blue bouncy mats, paint, sand and balls as well so it was a lot of fun. We’re also having a fundraising morning tea later in the month for staff which will be really good.”
To learn more about dystonia, head to dystonia.org.au, where donations can also be made to DNA.”
What DNA did in September to raise awareness
- Arranged a series of short videos by Australian health professionals and researchers on different topics relating to dystonia. These are available on our YouTube channel and our website
- Participated in an interview on radio 2GB about dystonia and awareness month activities
- Ran our 30 second awareness ad on as many local and community radio stations as we could
- Ensured neurologists’ rooms are stocked with DNA brochures
- Arranged two Zoom get together for members
- Held a Jump for Dystonia competition for members, families and friends. See the results here.
- Designed awareness posters below for display in the workplace, shopping centres, libraries and community centres
Thank you to everyone who participated in awareness month activities!
Page last reviewed and updated 16 December 2022