Read our latest news and browse our upcoming events.
Dear <<First Name>>,
We are thrilled SWAN is once again able to organise face to face events and we hope we do not have to cancel them at short notice due to COVID-19. You will see below we have a number of events planned. Hopefully one of them will be in a location not too far away from you. Thank you to the SWAN volunteers who are hosting these events on behalf of SWAN, we appreciate your support. And don't forget to save the dates for our pre conference dinner in your state on 19 June, and our virtual SWAN Disability Transition Conference on 20 June which will have a number of guest speakers talking on the various life stage transitions for our SWAN children. We will email all our members the full program shortly.
I had the pleasure of presenting at a couple of events recently, firstly to psychologists from the Australian Psychological Society and secondly, at an Industry Genomics Network Alliance (InGeNA) webinar. It is so important for SWAN to raise awareness in the wider community, particularly among health professionals, pharmaceutical companies and industry. So many positive things come from collaboration and partnerships. I believe it is important to share the experience and journey of what it is like to care for a child without a diagnosis and what the impact can be on families when a diagnosis is found. As well as raising awareness, it highlights the power of support from a range of different mediums.
As we head towards the colder months (well in the south anyway), I hope everyone can stay healthy. Remember if you think SWAN can support you in anyway, please don't hesitate to reach out.
Best wishes
Heather Renton
CEO
SWAN Australia
Event Dates MAY Virtual Events
SWAN members Informal Chat Friday, 14 May 1:30 pm - 2:30 pm (AEST)
SWAN Virtual Chat Session
Please click here to register.
SWAN members informal virtual chat session for those caring for a SWAN child over 10 years old Monday, 24 May 8:30 pm - 9:30 pm (AEST)
Please click here to register
SWAN Meet the Expert Series - Substitute Decision Making, Wills and Trusts Friday, 28 May 12:30 pm - 2:00 pm (AEST)
Please click here to register
MAY Face to Face Social Events Geelong Regional Morning Tea Catch up
Sunday, 23 May 10:00 am - 11:30 pm (AEST) SWAN Geelong Members Morning Tea - Geelong Playspace - weather dependent. Please registerhere to register
Post Mother's Day Mingles Sunday, 16 May 2:00 pm - 4:00 pm (AEST)
Brunetti Flinders Lane, Melbourne - Please click here to register.
Sunday, 23 May 2:00 pm - 3:30 pm (AEST)
Honey Badger, Hobart - Click here to register.
Saturday, 29 May 2:30 pm - 4:00 pm (AEST)
Adora Handmade Chocolates, Sydney - Please click here to register.
Sunday, 30 May 10:30 am - 12:00 pm (AEST)
Koko Black, Canberra - Please click here to register.
Sunday, 30 May 2:30 pm - 4:00 pm (AEST)
Charlie's Dessert Bar, Launceston - Please click here to register.
Sunday, 30 May 2:30 pm - 4:00 pm (ACST)
Koko Black, Adelaide - Please click hereto register.
Sunday, 30 May 2:30 pm - 4:00 pm (AWST)
Koko Black, Perth - Please click here to register.
Sunday, 30 May 2:30 pm - 4:00 pm (AEST)
Max Brenner, Gold Coast - Please click here to register.
Sunday, 30 May 2:30 pm - 4:00 pm (AEST)
Coco Monde, Newcastle - Please click here to register.
JUNE Saturday, 19 June - Pre Conference Dinner (most states) - more details coming soon. Sunday, 20 June - SWAN Virtual Conference - more details coming soon.
We want to support you!
If you would like some support or if your SWAN child is in hospital, please let us know so we can send a care pack or assist you in any way we can.
Please email info@swanaus.org.auwith the subject line: Support
Genetic Undiagnosed and Rare Disease (GUARD) Australia
Community Advisory Group (CAG) - Expressions of Interest
The GUARD Collaborative Australia (GUARD) is a coalition of peak body organisations; Genetic Support Network of Victoria, Genetic Alliance Australia (NSW), Syndromes Without A Name (SWAN) Australia and Genetic and Rare Disease Network (WA).
We represent the voice of people living with genetic, undiagnosed and rare disease and those who support them. We strive for a fair, equitable and collaborative approach to disability, health and wellbeing for all our community.
The GUARD Collaborative is forming a Community Advisory Group to ensure we are always connected to our community and represent the views of those we serve. The group will provide a platform to share unique perspectives and experience, to inform our collaborative work and to keep GUARD honest and true to our vision that - All Australians in the genetic, undiagnosed and rare disease communities have their health and support service needs met and can live their best lives. If you are interested in joining the GUARD CAG, please download the information sheet outlining the selection criteria and information on how to apply. For further information and to request a copy of the terms of reference, please email Monica Ferrie.
Research Opportunities Neurotherapeutics BRAIN AID - Benefits, Risks and Alternatives: Information to Augment Informed Decision Making
Researchers at UNSW Sydney, and The Sydney Children’s Hospital Network are seeking volunteer research participants to learn about the individuals understanding, experiences, and expectations of advanced therapies in paediatric neurology.
You are eligible to participate in this research if you are a parent or carer of a child with a neurodegenerative disease/ neurological disease.
If you decide to take part you will be invited to participate in a one on one interview with one of the researchers and to complete some questionnaires. At this interview you will be encouraged to share your experiences, views and understanding of a range of topics related to advanced therapies for neurodegenerative diseases. To learn more about the research study or to enquire about participating, please email A/Prof Michelle Farrar at UNSW Sydney.Participants wanted for interview – University of Melbourne research on genetic test results and electronic medical records. The Recording our Genes project, led by Megan Prictor at Melbourne Law School, is investigating the collection, use and sharing of genetic and genomic test results via networked electronic medical records, and what the law says about this.
The researchers are keen to interview adults who have had a genetic test in healthcare, as well as parents of children who’ve had a test, and other family members. They want to know what you think about how genetic and genomic test results are currently stored and shared, and how they should be in the future.
Getting involved in the project would mean participating in an interview of up to 60 minutes via Zoom or phone, arranged at a time to suit you. In recognition of your time, you would receive a $20 gift card after the interview is completed.
If you would like more information to decide whether to participate in an interview, please email Megan Prictor, visit the project website, or download the Plain Language Statement for this project.
Genetic Epilepsy Team Australia (GETA) Conference
Does your child have epilepsy? If you answered yes, you won't want to miss this livestream conference to hear the latest on genetic epilepsy research and precision medicine treatments from world-leading medical and scientific experts. You will have the opportunity to ask questions. Hosted by journalist and author Sarah James, this conference features an excellent line up of speakers and panelists. This conference is a favourite among many of our SWAN members, so if you would like to attend, please click here to register.
A New Driving Force Behind Safe Transport for Children with Disability
Complete the survey to win one of five $50 vouchers!
For families of children with disability and medical conditions, day to day transport can be a real challenge. If you have a child (under 16 years) with a disability or medical condition, MACA wants to hear about your experience. Please take our short survey today.
Every parent should have the peace of mind that their family is able to travel safely and comfortably.
Facebook Groups
If you have not had a chance to join one of our state-based groups, I would encourage you to do so. These will help SWAN support more families, and allow our families to support each other, through increased opportunities for online contact and virtual peer support. The links to all our groups and our Facebook page are below.
