Fundraising and awareness activities are carried out to support our aims:
- To provide appropriate, researched information for adults and children with dystonia, their carers and interested health providers.
- To increase community awareness of the condition.
- To fund seminars, educational forums and assist with research into dystonia.
Fundraising and Crowdfunding Guidelines
If you are considering fundraising or a crowdfunding campaign to raise money for the Dystonia Network of Australia we ask that you please contact us beforehand. We follow the guidelines of the Australian Charities and Not-for-profits Commission (ACNC) and can only use donations raised in ways that are consistent with our stated aims and constitution. The ACNC suggests that people who wish to fundraise for a charity do the following:
- Contact the charity they plan to support to make it aware of the campaign and seek its approval and support
- Consult the charity on aspects such as communications, branding, dealing with inquiries from the public, and how funds raised are distributed
- Clarify how the pledged funds will actually be collected and used
- Adhere to any policies the charity might have concerning fundraising
The full ACNC guidelines for charities and individuals can be found here.
September – Dystonia Awareness Month
Go to our Dystonia Awareness Month 2022 page for information on activities during September 2022.
Dystonia Awareness Month 30 second radio ad
We contact a number of community radio stations to request they run this ad during Dystonia Awareness Month. Should you have a local community radio station in your area that you think may be interested in running this ad to promote dystonia awareness, please contact us.
PayPal Giving Fund
Dystonia Network of Australia has joined the PayPal Giving Fund. 100% of funds donated go directly to a charity when donations are made via the Giving Fund.
PayPal Giving Fund – Dystonia Network of Australia
You can now create your own campaign through MyCause to raise money for the Dystonia Network of Australia Inc. Should you wish to do so, please contact us.
Brochures for Botulinum Toxin Clinics
We would like to ensure that all Botulinum Toxin clinics in Australia hold our information brochures. Can you help us spread the word on dystonia and request your clinic to have our brochures on display? Please contact us and we will send you the resources required.
2022 – Awareness Month Videos
Dr Florence Chang did a presentation on the effects of mental health on dystonia. Watch it here.
A/Professor Bronwen Ackermann did a presentation about retraining for task-specific dystonia. Watch it here.
Dr Stephen Duma did a presentation on tardive dystonia. Watch it here.
2022 – Gold Coast Marathon
Congratulations to Courtney Law who ran her first half marathon on the 2nd July 2022 in the Gold Coast Marathon! Courtney was raising awareness and funds through the Pay Pal Giving Fund to help assist with research into Dystonia. Below is a video of Courtney’s brother Chris who has a very rare form of Dystonia.
2021 – Wendy’s Walkathon
During September 2021 the amazing colleagues of one of our Victorian members arranged, a morning tea, plant sale, and a virtual Walkathon to celebrate Dystonia Awareness Month. The funds were used to contribute to dystonia research projects in Australia. More information is available here. If you would like to read a little of Wendy’s story and the fantastic activities of her colleagues for Wendy and dystonia research please click on the link below.
Wendy’s Walkathon – to raise awareness and funds for Dystonia Victoria | DoJiggy
2021 – Awareness Month Webinars
Dr. Tjrk Lagrand did a presentation on Functional Neurological Disorders, including Functional Dystonia. This presentation is on our DNA YouTube Channel. Click here to watch in YouTube.
Melani Boyce, Ph.D. candidate, and senior neurological physiotherapist presented her research into Dystonia. This is on our YouTube Channel. Click here to watch in YouTube.
Dr. Florence Chang did a presentation on Musicians’ and Forearm Dystonia. This is on the DNA YouTube Channel. Click here to watch in YouTube.
2021 – The Advocate Podcast
The Advocate Podcast: Monash University rescued Afghan academics and conversation on Dystonia Awareness Month on Apple Podcasts
Show The Advocate Podcast, Ep Monash University rescued Afghan academics and conversation on Dystonia Awareness Month – 22 Sept 2021
2020 – Raffle of Artwork
DNA held a raffle for a painting generously donated by Linda Quimby. The winner was Hilary Nourse, and we would like to thank everyone for supporting this raffle.
2020 – The Hills Radio Interview Adelaide
Adelaide Hills Radio as well as some other country radio stations have been running our ad for dystonia awareness week. Chris Carpenter, General Manager of Adelaide Hills Radio, interviewed Kerrie & Laraine on the 3rd September 2020 about Dystonia and DNA. We won’t be giving up our day jobs any time soon but it went pretty well except for a couple of audio glitches.
With Permission of The Hills Radio Adelaide
2019 – ABC Health Report on Dystonia
During 2019 the ABC Health Report interviewed DNA members Robyn and Paul who told their Dystonia stories. Our DNA Advisory Board Member Associate Professor Victor Fung, MDS Neurologist spoke on Botox and its effective treatment of Dystonia and how it works by altering messages from the brain. Advisory Board member Dr Stephen Tisch, MDS Neurologist spoke about Movement Disorders and what they are and he also spoke on new MRI called a DTI. Dr Lynley Bradnam, Professor of Physiotherapy (NZ) spoke about Dystonia, what it is and different types of the condition, also DBS surgery and how in the early days it was thought it was a hysterical condition and advances in imagery
2019 – Dystonia Awareness Week 7th – 14th September
During Awareness week DNA held awareness booths at Royal North Shore and St Vincent’s Hospitals in Sydney and at a GP Education Day in Adelaide.
2018 – Sydney Dystonia Awareness Seminar
This was held on the 14th September 2018 at Westmead Hospital in collaboration with the Department of Neurology. It was a successful day with speakers including Dr Stephen Tisch, Dr Jacqueline McMaster, Nurse Practitioner Emma Everingham, Neurological Physiotherapist Melani Boyce, Dr Bart Post from The Netherlands, Dr Hugo Morales Briceno and Jayne Lovell from the New Zealand Dystonia Patient Network. Topics covered how dystonia is diagnosed, non-invasive treatment for tremor, DBS, physiotherapy and young onset dystonia. The short film ‘Dystonia’ by Peter Chiverton was also shown.
DNA would like to give thanks to David Tsui, the Department of Neurology at Westmead Hospital, the wonderful speakers and seminar sponsor Medtronic.
2018 – Adelaide Dystonia Awareness Seminar
This was held on the 21st of September 2018 at the Adina Apartment Hotel, Adelaide. It was a successful day with speakers including Podiatrist Jodie Simon, Associate Professor (Physiotherapy) Lynley Bradnam, Occupational Therapist and Clinical Nutritionist Elizabeth Barnard, Ophthalmologist Dr Sumu Simon, Persistent Pain Coordinator Emily Wang and Sue Williams who has Blepharospasm. The short film ‘Dystonia’ by Peter Chiverton was also shown.
DNA would like to give thanks to Margot Chiverton, the wonderful speakers and the Adina Hotel
2018 – New Zealand Dystonia Patient Network Seminar
Chris, Juliette and Kerrie attended the seminar on the 16th June 2018 as guests of the NZDPN and Kerrie was a guest speaker. Other speakers included Dr Barry Snow, Neurophysiotherapist Julie Rope and DBS patient Alison Fitzpatrick.
2017 – Dystonia Awareness Seminar Sydney
This was held on the 29th September 2017 at Hotel 175, Westmead, Sydney. Speakers included Professor George Mellick, Dr Shekeeb Mohammad, Associate Professor Victor Fung, Dr Neil Mahant and Dr Hugo Morales Briceno. Topics covered included cervical dystonia, unusual dystonia syndromes, cerebral palsy & dystonia and research programs. The seminar was kindly sponsored by Medtronic.
2016 – Dystonia Awareness Seminar Sydney
A very successful Dystonia Awareness Seminar was held at Westmead Hospital, Sydney on the 2nd September 2017. Over 60 people attended on a very wet day. Guest speakers included A/Prof Victor Fung (botulinum toxin), Dr Kishore Kumar (cervical dystonia), Prof Russell Dale (forms of dystonia in children), Dr Neil Mahant (deep brain stimulation), Dr Stephen Tisch (deep brain stimulation and tremor), Melani Boyce (advances in physiotherapy) and David Tsui, Clinical Nurse Consultant (blepharospasm). Our sincere thanks to Medtronic who sponsored the seminar.
2016 – Benefit Night
The Auction & Benefit Night on 28 April 2016 at Terranova Bar & Restaurant was a great success. Around 200 people attended, all with the intention of enjoying the atmosphere, the wonderful food and drinks and generously giving to a great cause. DNA cleared $16,000 from the event. Many thanks to our hosts and also to those of our members who contributed to the night and those who donated auction items.
Our particular thanks go to Marina McShannon, Phil Mangan, Leah Ding, Jacqui Sutton and Eric Williams.
2015 – Trivia Night
This was held at the Springwood Country Club, Springwood, Blue Mountains, NSW on Saturday 25th July. Here are some photos from the night.
On behalf of Kerrie, Laraine and the DNA committee, we wish to give our heartfelt thanks to everyone who supported us and took part in this Inaugural Dystonia Awareness Campaign and Fundraiser. We have been overwhelmed with everyone’s generous donations of money and prizes. It was an absolutely fantastic night with around 100 people attending the trivia night. It was really wonderful to see all of our families and friends gathering together to support Dystonia! After all our expenses, we raised the amazing amount of $3500 which will go towards the reprinting of our brochures so we can start delivering them to all the Botox Clinics, MDS Neurologists and hospitals in Australia as well as providing new members with their packages.
2015 – Sydney City 2 Surf
It was a fantastic, sunny day for the City2Surf. Our team included Laraine, Ann, Claire and Candy. A total of $1220 was raised. Thank you to all who sponsored the team members.
2015 – Inaugural Dystonia Seminar at the Garvan Institute
On the 14 August 2015 we held our inaugural seminar. It was a great day with 96 registrants and an amazing range of guest speakers in the auditorium at the Garvan Institute, Sydney, including our Keynote Speaker Professor Marina de Koning-Tijssen from the Netherlands. Patients, carers, nurses, medical staff and allied health professionals combined to make a very appreciative audience who were introduced to a wide range of interesting, professional presentations on different aspects of dystonia. Our thanks to Peter Jackson for the wonderful photos and the Genetic Alliance for their assistance in making this, our first seminar, so successful.
2014 – Sydney City2Surf
It was a wonderful effort by Laraine and Claire achieving a fantastic time of 2hrs 54 mins. Karyn, her sister and niece achieved a fabulous time of 2hrs 35 mins. Congratulations to all. It was a great day for raising awareness of dystonia.
Page last updated 12 March 2023