Read our latest news and browse our upcoming events.
Dear <<First Name>>,
SWAN is thinking of our communities in NSW and Victoria who are in lockdown. It is not an easy task to homeschool our children, particularly if you are working at the same time. Hopefully, the COVID-19 case numbers will drop soon, and restrictions will ease.
#SWANaus21 – Disability Transition Conference
Thank you to our presenters, sponsors and everyone who attended #SWANaus21 – our Disability Transition Conference. If you registered for the conference but could not attend the sessions, you would have been sent a link so you can watch the replays. Most of the presentations will be available to watch on our websiteand Youtube channel in a couple of months for anyone to access. SWAN congratulates Kris Pierce for being our top Tweeter (#SWANaus21) on the day.
New SWAN Australia Website
It has been a long time coming, but finally, SWAN is excited to launch our new website. The website is full of great resources and tips to support our families. I would encourage you all to have a look, and please let us know what you think and if you would like to see some additional resources added to the website. Our website, like our newsletters, has a list of all our upcoming events. We would like to expand our parent stories section on our website, so if you would like your child’s story and photographs included on our website please email them to: heather@swanaus.org.au
NDIS Independent Assessments Abandoned
SWAN was thrilled to hear that the proposed NDIS independent assessments, which aimed to measure participants’ functional capacity, were abandoned. Many thanks to everyone who advocated so hard to stop these assessments from going ahead.
Thank You For Your Donation
Lastly, I wish to extend my sincere thanks to everyone who kindly donated to our tax appeal. Your support is very much appreciated and means we can continue supporting and advocating for our community.
Please stay safe and well through these unpredictable times.
Best wishes
Heather Renton
CEO
SWAN Australia
July Events
Virtual Events SWAN informal virtual chat session Wednesday, 20 July - 8:30 pm - 9:30 pm (AEST)
SWAN Virtual Chat Session
Please click here to participate.
SWAN informal virtual chat session with members who have a SWAN child over 10 years old Monday, 28 July - 8:30 pm - 9:30 pm (AEST)
SWAN Virtual Chat Session
Please click here to participate.
Special Children's Christmas Parties
SWAN children in grade 6 or below are invited to a Special Children’s Christmas Party in a capital city. Please note, one ticket provides entry to one SWAN child and one adult. Also, please be aware that siblings are not invited (sorry, but this is not a SWAN event). Places are limited, and there is no guarantee of tickets, but SWAN will try our best. Please email events@swanaus.org.au before 31 July, stating your name, the state you reside in, and your SWAN child’s name and age.
The Special Children’s Christmas Parties are as follows:
Melbourne, Saturday, 4 December: 10:30 am – 1:00 pm, Grand Pavilion of Melbourne Showgrounds
Brisbane, Saturday 11 December, 10:30 am – 2:30 pm, Brisbane Convention & Exhibition Centre
Please note, the Tasmanian Special Children’s Christmas Party is yet to be announced. We will email our Tasmanian members once we have the details.
SWAN Peer Support Mentoring Program
Calling for Expressions of Interest We are seeking expressions of interest from SWAN members to volunteer for our Victorian Peer Support Leaders Mentoring Program. If you are interested in becoming a SWAN Peer Support Leader, please email heather@swanaus.org.au with a brief explanation of why you thing you would make a great Peer Support Leader. We will offer training and support to assist you in becoming Peer Support Leaders. Expressions of interest close 30 July. Please do not hesitate to contact Heather if you would like further information.
Research Opportunities
What do parents think of new genetic testing? Dr Erin Turbitt is leading a new study with researchers at the Murdoch Children’s Research Institute. In her study, she will be interviewing parents of children with a genetic developmental condition to find out what they think about new genetic tests. These tests may give families more detailed information about their child’s condition. For example, the information from the test could include whether a child may be more or less severely affected when compared to the average child with that same condition.
Erin needs parents to participate in an the interview study about new genetic tests and she hopes that you can help.
Who is doing this research and why? Researchers at the Murdoch Children’s Research Institute in Melbourne and the University of Technology Sydney.
Who can participate? If your child has been diagnosed with a genetic developmental condition (this includes conditions such as Fragile X Syndrome, Angelman Syndrome, and Prader Willi Syndrome) Erin wants to hear from you. Your experiences and opinions as parents of a child with a genetic condition are highly valued.
What will happen in the study? You will participate in your choice of a telephone, virtual (via Zoom), or email interview which will take approximately 30 minutes to complete. You will receive a $50 gift card to thank you for your time.
What should I do if I am interested? Contact Erin Turbitt: erin.turbitt@uts.edu.au to register your interest and find out more. Alternatively, you can fill in your details here at this link and Erin will get in touch with you.
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
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.
