Wishing our members and readers a safe and happy festive season!
It has been a milestone year at SWAN, as we celebrated 10 years of supporting, informing and advocating for the SWAN community. It has been wonderful to reconnect with members at in-person events. We plan to keep this going into the new year, especially in states that missed out on Undiagnosed Children's Awareness Day celebrations due to wet weather.
This year, we ran a pilot peer support leaders program in Victoria, which we hope to extend to other states in 2023. We also started some new groups, including SWAN Siblings virtual group and the SWAN Bereavement Group.
Human Genetics Society of Australasia (HGSA) Conference Last month I visited Perth and attended the HGSA Conference, where I presented on our SWAN members' perspective on DNA data ownership and storage. Thanks to everyone who completed our survey. I had the opportunity to raise awareness of SWAN with genetics health professionals, researchers and other professionals. It was wonderful to catch up with some Perth-based SWAN parents for dinner and Josh Patrick, our SWAN Siblings Ambassador.
Advocacy Advocacy Toolkit - NEW The SWAN Advocacy Toolkit is a new resource designed to help SWAN parents and carers advocate for their children. It focuses on advocacy in the following settings: healthcare, education and services and supports (including the NDIS) and education. SWAN wishes to thank the Genetic Support Network of Victoria (GSNV) and the Margaret Sahhar grant for their generous support in enabling SWAN to develop this resource for SWAN families and the wider genetic support group community.
We have compiled a list of funding resources as a one-stop-shop for SWAN families who are seeking additional funding support. Thank you to SWAN mum Sarah Strachan for suggesting this resource. We always welcome ideas and suggestions from SWAN members, so please reach out if you have any.
Disability Royal Commission - submissions closing 31 December 2022 The Disability Royal Commission (DRC) is a response to concerns about violence, neglect, abuse and exploitation of people with disability in a variety of settings. You can read more about the DRC here or make an individual submission to the DRC. SWAN will also be making a submission, so if you would like to contribute to it, please email Ant by Friday, 16 December, so we can include your feedback in our submission.
Have Your Say
You are invited to have your say about the NDIS in an independent review. Please click here to read about the approach to the review and click here to understand how you can get involved.
Festive Season and Office Closure
Our office will be closed from Monday, 26 December until Monday, 30 January. Our social media will have limited monitoring over this time.
I know this time of year can be a tough time for SWAN families too, whose children are unwell or in hospital or families who have lost loved ones. On behalf of the SWAN Board, staff and myself, I would like to wish everyone a happy festive season and holidays, and hope that everyone remains safe and healthy year in 2023!
Chief Executive Officer and Founder
SWAN Christmas Wish This December, please consider donating to SWAN so we can continue to fund our Peer Support and Information service. Please click here to donate.
Helen, our Peer Support and Information Officer has assisted a number of families this year who have benefited from her in-depth knowledge of disability supports and services. More importantly, as a mum to a 28-year-old complex SWAN child, she is the well place to offer peer support. To continue providing this well-needed service and keep our information resources up-to-date and expanding, we are relying on donors for help.
“Helen got us through a very difficult and stressful time. My husband and I believe her experience as an advocate and as a carer of a rare child was priceless. Helen's expertise and knowledge was well above the private support coordinators we have seen in the past. She helped us put our best foot forward with the NDIS and prepared us in a short time frame.” - SWAN mum
If you are not in a position to donate but are stuck for gift ideas, please consider purchasing our SWAN merchandise via our website! Our bags and T-Shirts are great practical gifts, and you can feel good about making a difference too.
Our SWAN large washable environment bags are a practical addition to any shopping outing. They are compact, lightweight, washable and hold plenty of shopping. Price: $15. Pictured: side 1 and 2 of SWAN bag. Our good quality SWAN T-shirts (pictured below) come in a range of sizes from 6 months to 4XL (unisex). If you are a proud supporter of SWAN, please consider purchasing a T-shirt and show you care about our SWAN community. Price: $30.
Please order sooner rather than later to allow for postage delays in the lead up to Christmas, particularly if you are outside Victoria.
Can You Help Us Out?
SWAN is aiming to increase our partnership opportunities. Do you work for an organisation that has a community or workplace giving program? Do you have connections within the corporate world and work for an organisation that has the capacity to donate to SWAN?
If so, we need your help to support SWAN. Unfortunately, we are fast running out of money to support our community so we need your help. If you would like to discuss funding or fundraising opportunities please contact Heather.
If you would like to fundraise on behalf of SWAN, please refer to our website for ideas and our proposal and fundraising guidelines. Please contact us if we can assist with your fundraising efforts in any way. Please note in accordance with fundraising regulations, SWAN Australia is legally required to approve and authorise all volunteer fundraising activities.
Updating Your and Your Child's Details
Have there been changes to your details or your child's details since joining SWAN? Please email Ant if:
Your child has received a diagnosis since joining SWAN undiagnosed
Your child has received a different diagnosis to before
You have moved house
You have a new mobile number
If you would like to connect with members in your area or members whose children have the same condition as your child, feel free to let Ant know at any time.
Plain Language Genomic Test Reports Some of our SWAN families kindly offered to be participants in Gemma Brett’s Australian Genomics research study about plain language genomic test reports. You can download these plain language reports by clicking here.
You can read about Gemma’s research findings at the following links:
Supporting your young person with CP and complex communication needs to talk about puberty, relationships and sexuality Are you the parent or guardian of a young person (aged 10-24 years) who has CP and uses AAC to communicate?
During adolescence and young adulthood, your young person is going through major life changes. These include things like physical changes related to puberty and developing a sense of sexuality.
We want to know about your experiences talking with them about these important and tricky changes! Please click here for the study flyer and to get involved, please email Megan Walsh.
Hospital care packs - 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 email@example.com the subject line: Support
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 or in-person peer support. The links to all our groups and our Facebook page are below.