Thursday, 17 September: 8:30pm - 9:30pm (AEST)
SWAN Virtual Chat Session - Informal chat session with SWAN members with kids over 10 years old
Please register here.
Friday, 18 September: 8:30pm - 9:30pm (AEST)
SWAN Virtual Informal chat session with SWAN Members with kids under 10 years old
Please register here.
For security reasons you will be sent the virtual event login details once you have registered for an event.
CHIEF EXECUTIVE OFFICER'S GREETING
Hi Everyone,
It has been a tough few weeks for Victorians in Stage 3 and 4 Coronavirus lockdowns. We hope that everyone is managing to the best of their ability. We trust that the SWAN families who took us up on the offer to partner them with a Master of Genetic Counselling student from the University of Technology, Sydney are benefiting from their support. Many thanks to Alison McEwan, Helen Mountain and their 14 students for their support.
SWAN has also teamed up with students studying the Master of Genetic Counselling course at the University of Melbourne. We currently have three students doing a community placement with SWAN. Angelique Lang, Deb Bianco and Julia Pyne are updating our database in the hope we can offer more targeted supports to our members and connect them with other families who have children with the same rare genetic condition. If the students have not reached out to you already, they will shortly. You can read more about the students here. Many thanks to Sam Wake, Jan Hodgson and the Genetic Support Network Victoria for their support with this project.
I have been fortunate enough to be able to give a few presentations to different organisations to promote the work of SWAN and raise awareness of undiagnosed and rare genetic conditions within the wider community. These included: ANU Medical Students' Society Medical Symposium, Master of Genetic Counselling Students (Melbourne Uni) and Amaze peer support group leaders. I have also attended a number of seminars on COVID, disability, education, health, policy and advocacy so I can better support our community.
Today the NDIA and NDIS Quality and Safeguard Commission (NDIS Commission) jointly released an open letter to all Victorian NDIS participants, their families and carers around "What to expect from providers" and "Protecting yourself and others". The NDIS will now fund personal protective equipment (PPE), including facemasks, face shields or gloves if you receive at least one hour a day of face to face daily living supports. These items can be claimed from your core support budget. Please be aware if you require these items outside the home, they are considered everyday expenses and the NDIS will not fund them. To read the open letter please click here.
The Association for Children with a Disability (ACD) is doing a great job at keeping up to date with the latest COVID-19 information in Victoria with regards to children with a disability. If you have not had a chance to visit ACD's website we would encourage you to do so. ACD has been supporting children with disability and their families across Victoria for over 40 years.
Unfortunately due to Coronavirus, the Special Kids Christmas Party in every state have been cancelled this year. I know many of you will be disappointed and were looking forward to the Christmas party. The company that organises the parties just did not feel they could take the risk with proceeding with the events around the country. This reflects the uncertainty of planning face to face events over the coming months, which is impacting SWAN as well.
Stay happy and healthy.
Heather Renton Chief Executive Officer
SWAN Australia
FACEBOOK GROUPS Due to the current social distancing measures, we have a number of closed 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.
FaceMatch Acceptability and Useability Study
Does your child have a genetic condition that has a risk of developmental or intellectual disability or are you still searching for a diagnosis? We need your help to test FaceMatch, a new digital platform developed by parents, doctors and scientists to help parents find a diagnosis. Testing will take around 20 minutes, and is done entirely online at a time that suits you. Please contact Stephanie Quattromani for more information.
Mobility and Accessibility for Children in Australia
The rights of children with disability and medical conditions to safe and accessible transport are not equal to children without disability. Mobility and Accessibility for Children in Australia Inc. (MACA) is a not-for-profit organisation dedicated to supporting and advocating for the right to safe and accessible transport for children with disability (and/or medical conditions). MACA is responsible for delivering a national information resource supporting the rights of all children to safe and accessible transport and participation in community life. To achieve this, MACA needs your help. If you are a parent, health professional, organisation or government agency who either transport children or have a responsibility relating to the transport of children with disability and medical conditions, please consider their national survey.
RESEARCH, TREATMENTS AND CLINICAL TRIALS SUBMISSION
The House of Representatives Standing Committee on Health, Aged Care and Sport is inquiring into the approval processes for new drugs and novel medical technologies in Australia, with a particular focus on access to the treatment of rare diseases and conditions where there is high and unmet clinical need. More information about the inquiry can be found here. SWAN Australia is interested in your feedback which will help inform our submission. We also encourage you to make your own submission. If you would like to contribute to SWAN's submission or would like some help with your own submission, please email Heather: heather@swanaus.org.au
ur child have a genetic condition that has a risk of developmental or intellectual disability or are you still searching for a diagnosis? We need your help to test FaceMatch, a new digital platform developed by parents, doctors and scientists to help parents find a diagnosis. Testing will take around 20 minutes, and is done entirely online at a time that suits you. Please contact 
