I hope that you have enjoyed some rest and sunshine this Summer. A warm welcome to our members who have recently joined SWAN, we do hope we get to meet you at a SWAN event soon. Our monthly newsletters list upcoming SWAN events and opportunities, news from the community and up-to-date information about health and disability services and supports.
Rare Disease Day
Rare Disease Day is an international day that takes place on the last day of February each year. The day raises awareness of rare diseases and the importance of equity, diagnosis, treatments and inclusion. Please see our events section below to register for a SWAN Rare Disease Day event near you. This year, we are asking people to consider donating their coffee money to SWAN to fund our support and system navigation service (see below).
Congratulations Professor Martin Delatycki, Josh Patrick and Sarah Gray
We warmly congratulate Prof Martin Delatycki (Professor of Clinical Genetics and Medical Director at Victorian Clinical Genetics Services) on being awarded a Member (AM) in the General Division of the Order of Australia. Professor Delatycki has diagnosed many SWAN children over the years, and we are grateful for his commitment to finding answers for those who remain undiagnosed. Josh Patrick (SWAN Siblings Ambassador) was presented with the Shire of Northam Community Youth Citizen of the Year award for 2023. He was also nominated for the '7News Young Achiever Awards' earlier this month. We are continuously inspired and amazed by Josh's devotion to his family and community. Finally, we congratulate Sarah Gray (founder and CEO of charity ausEE Inc.) for her Medal of the Order of Australia (OAM) for her service to community, advocacy and support for Australians living with an eosinophilic disease.
Disability Royal Commission (DRC)
Last December, SWAN made a submission to Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. We feel that our contribution was well received, based on detailed feedback from the DRC. Here were some of their comments:
We can see from your report the myriad of challenges that people with rare/undiagnosed syndromes and their families have in dealing with complex systems that are unwilling to accommodate them...It was also interesting to see how many of the experiences outlined parallel the experiences of people with disability (and their families) from more commonly recognised disabilities. This speaks to the systemic problems and barriers that we as a country need to take responsibility for and address in order to create the positive change we need to see.
You can follow the work of the DRC via their website or by subscribing to their newsletter.
Fun Flight and Peninsula Aero Club
SWAN was fortunate enough to be invited to partner with Fun Flight and Peninsula Aero Club last Saturday to give a dozen of our Mornington Penisula members the opportunity to experience a joy flight out towards French Island. We are negotiating other partnerships with aero clubs through Fun Flight around Australia to be able to give more SWAN families the wonderful opportunity of a joy flight. Congratulations to SWAN child Lloyd Pinn who experienced the 15,000th Fun Flight and received a bonus flight jacket as a prize. Thank you Fun Flight and Peninsula Aero Club for a brilliant day out. You can see some photos of the day below.
We look forward to supporting all our members in 2023.
Chief Executive Officer and Founder
The Diagnostic Odyssey of Genetic Diseases Webinar Wednesday, 22 February - 12:15 PM (AEDT)
Please click here to register.
Rare Disease Day Dinner - Sydney Thursday, 23 February - 6:30 PM
PappaRich at Westfield Parramatta - 159-175 Church St, Parramatta NSW 2150
Please click here to register.
Rare Disease Day Event - Sydney Friday, 24 February - 9:30 AM - 2:00 PM
Joan Sutherland Performing Arts Centre - 597 High St, Penrith NSW 2750
Please click here to register.
Family morning tea picnics
Please register by clicking on the link to your nearest city. Saturday, 25 February - 10:00 AM - 12:00 PM
Have there been changes to your details since joining SWAN or is there anything you would like to update us on? Please email Ant if:
Your child has received a diagnosis since joining SWAN undiagnosed
Your child has received a different diagnosis than before
You have moved house
You have a new mobile number or email address
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.
Would you like to join our Community Advisory Group (CAG)?
We established the SWAN CAG last year and had 10 members join. Each term on the CAG goes for 12 months so we are welcoming expressions of interest again from both existing members and new applicants.
The idea of having a CAG is to represent the voice and best interests of the community. The CAG meets 4 times per year to discuss ongoing issues for SWAN families and the best way to support families. It may involve feedback on submissions, new ways to support members and other areas of interest for our members.There are also opportunities to be involved outside of members (e.g. providing feedback for submissions), but this is optional.
If you're interested, please email an expression of interest by February 28th to Ant. Please state why you are interested and what you feel you would bring to the CAG. For more information, please contact Heather on 0404 280 441.
Healthcare Transition Resource
We are pleased to provide SWAN families with a resource designed to support you during the transition from paediatric to adult care. Many of our families find this period of time challenging. We hope that our resource helps you to prepare for and experience a smooth transition. Please click here to access the resource.
SWAN wishes to thank Masters of Genetic Counselling students at the University of Melbourne who interviewed SWAN parents and assisted with preparing this resource. We also wish to thank the parents involved in these interviews for their insights and contributions.
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.
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.