What will the Federal election mean for SWAN families? You can help us advocate for change.
Dear Reader,
School holidays can be both relaxing and enjoyable, and exhausting and challenging for SWAN families. I hope parents can make a little bit of time for themselves to appreciate the good things in life and I hope everyone has an enjoyable Easter (if they celebrate it). Below is an update of what we have been up to this past month.
Federal Election - 21 May 2022 Our CAG discussed the key issues that we should advocate for in the lead up to the Federal Election. These included:
Diagnosis
NDIS
Access to Health Care
Improved Psychological Supports
Support for a Productivity Review of the cost of caring for a child/ young people with a chronic health condition.
You can help us advocate for change by writing to your local member or candidate and letting them know what SWAN issues are important to you. You can also request a meeting with them to further discuss your concerns. We have a template letter you can download and use as is, or personalise the cover letter to share your story. Please contact meheather@swanaus.org.au- 0404 280 441if you would like some help with contacting your local member or candidate or if you would like some strategies on how to make the most out of the meeting.
Please be aware that many of our SWAN members may be entitled to vote early or by casting a postal vote. More information can be found on the Australian Electoral Commission's website.
SWAN in the Media Our SWAN Ambassador Associate Professor Sue White and I were delighted to be guests on David Bevan's - ABC Radio Adelaide - "What Ails You" segment on 22 March. It was a wonderful opportunity to raise awareness of undiagnosed and rare genetic conditions in the wider community.
Undiagnosed Day and Undiagnosed Children's Awareness Day
There has been some confusion over the past couple of years about Undiagnosed Children's Awareness Day. The Undiagnosed Diseases Network International (UDNI) is a network of advocates including clinicians and representatives from undiagnosed disease patient groups, who work together to improve the unmet needs of undiagnosed patients. They announced a couple of weeks ago that they will mark Undiagnosed Day on Friday, 29 April. SWAN UK always celebrate Undiagnosed Children's Day the last Friday in April. And in Australia together with our SWAN friends in NZ, we hope we can once again hold face to face events to mark Undiagnosed Children's Awareness Day on the second last Sunday in October - Sunday, 22 October 2022.
SWAN Community Advisory Group (CAG) Thank you to our SWAN members who have joined our Community Advisory Group. We had a great first meeting last week and discussed the issues that were important to SWAN families in 2022. We look forward to introducing you to our CAG members in the next newsletter.
Congratulations to our Rare Disease Day Survey Prize Winners
Thanks to those who provided feedback by completing the survey about our SWAN Rare Disease Day virtual event held in February. Carer Gateway (co-host of the event) has awarded vouchers to the following winners: Maya Pinn, Stephanie Downing and Judith Walker.
Best wishes,
Heather Renton
CEO - SWAN Australia
Events
April Events (upcoming) SWAN informal virtual chat session Tuesday, 26 April - 8:30 PM - 9:30 PM (AEST)
Please click here to register.
NDIS National Day of Action virtual chat session Thursday, 28 April - 1:00 PM - 2:00 PM (AEST)
Please click here to register.
May Events SWAN Siblings virtual catch up (primary school aged siblings)
Friday, 6 May - 6-7 PM (AEST)
Please click here to register.
SWAN Siblings virtual catch up (high school aged siblings)
Friday, 6 May - 7-8 PM (AEST)
Please click here to register.
SWAN informal virtual chat session with members who have a SWAN child over 10 years old Wednesday, 11 May - 12:30 PM - 1:30PM (AEST)
Please click here to register.
SWAN informal virtual chat session Wednesday, 25 May - 8:30 PM - 9:30 PM (AEST)
Please click here to register.
Meet the Experts Session - Psychologist - Evelyn Bugel Monday, 30 May - 8:00 PM - 9:00 PM m (AEST)
Please click here to register.
Evelyn Bugel - Psychologist
Post Grad Dip (Psych), Post Grad Dip (Spec Ed) Adv Dip (Gestalt Therapy) Back by popular demand, we invite you to join Evelyn Bugel as our guest host at our next Meet the Experts Session(see events section above). Below is a brief bio taken from Evelyn's website.
Evelyn is a Melbourne-based psychologist offering counselling services especially developed for carers. Evelyn brings both extensive and personal experience to our session, having been a carer to a child with disability. Evelyn can be relied upon to understand and meet the unique needs of carers who have loved ones with disabilities, mental illness or chronic conditions.
Introducing SWAN Siblings!
International Siblings Day was on Sunday April 10th. In celebration of the day, we are thrilled to launch a new peer support initiative: SWAN Siblings hosted by Josh Patrick!
Josh, our new SWAN Sibling Ambassador, is the brother of Charlotte. Their family is based in WA. Josh is also involved with Young Carers, but wanted to lead a peer support group for SWAN siblings specifically. He will be leading monthly peer support sessions over Zoom where members can talk about their experiences as SWAN siblings, their passions, or "absolutely anything" really! To know more about Josh and SWAN Siblings, please click here.
These meetings will be held on the first Friday or Sunday of each month at:
6:00 PM - 7:00 PM (AEST) for SWAN Siblings who are primary school-aged
7:00 PM (AEST) for SWAN Siblings who are high school aged
SWAN siblings can register, or you can register on their behalf so they can attend the sessions below by clicking on the hyperlinks. Please note that the high school sessions will be run almost entirely by Josh and no SWAN staff member or adult be present apart from at the beginning or end of the sessions. We will have a teacher present or SWAN staff member (or both depending on numbers) for the primary-aged sessions.
Josh will also moderate and lead a private Facebook group for siblings. SWAN siblings must be 13 or over to join this page, due to Facebook regulations. They can access this page and request to join via the following link: https://www.facebook.com/groups/swanaussiblings.
SWAN Siblings Zoom Catch-ups 2022
Friday 6 May
Primary school catch up: 6-7 PM (AEST). Please click here to register.
High school catch up: 7-8 PM (AEST).Please click here to register.
Sunday 5 June
Primary school catch up: 6-7 PM (AEST). Please click here to register.
High school catch up: 7-8 PM (AEST).Please click here to register.
Friday 1 July
Primary school catch up: 6-7 PM (AEST). Please click here to register.
High school catch up: 7-8 PM (AEST).Please click here to register.
Sunday 7 August
Primary school catch up: 6-7 PM (AEST). Please click here to register.
High school catch up: 7-8 PM (AEST).Please click here to register.
Friday 2 September
Primary school catch up: 6-7 PM (AEST). Please click here to register.
High school catch up: 7-8 PM (AEST).Please click here to register.
Sunday 2 October
Primary school catch up: 6-7 PM (AEST). Please click here to register.
High school catch up: 7-8 PM (AEST).Please click here to register.
Friday 4 November
Primary school catch up: 6-7 PM (AEST). Please click here to register.
High school catch up: 7-8 PM (AEST).Please click here to register.
Sunday 4 December
Primary school catch up: 6-7 PM (AEST). Please click here to register.
High school catch up: 7-8 PM (AEST).Please click here to register.
NDIS National Day of Action
The NDIS National Day of Action is another advocacy initiative in the lead up to the election, supported by Teamwork Works and Every Australian Counts. Individuals and organisations all over Australia will be hosting events to defend the NDIS and raise awareness of funding issues.
SWAN will be hosting its own virtual event on Thursday, April 28 at 1:00 PM - 2:00 PM (AEST). If you would like to join this discussion with other SWAN members, please register here. If you cannot attend, we invite you to submit a video about your recent experience with the NDIS. Please email these along with any questions to Ant: ant@swanaus.org.au.
You can also contribute individually by signing the open letter against NDIS cuts or by sharing your story. Thanks in advance for advocating to make the NDIS better for all participants.
SWAN Portraits Exhibition The SWAN Portraits Exhibition will be extended until April 30th due to popular demand!
When artist Crystal Lina met Kat Barlow, a friendship was formed and Crystal wanted to pay forward an act of kindness. They imagined how much it would mean to other families to capture the beauty and diversity of their children. SWAN Portraits ran in person in 2020, and is now brought to you online. Buy a ticket here for access to the story behind the exhibition, artist videos, information on the artists and SWAN children involved and the portraits themselves. Money raised from this exhibition will go towards our hospital care pack program.
Natasha shares the story of Miller, her mighty two-year-old son, the youngest of three boys. Their journey towards a diagnosis is ongoing. It all started when they found that Miller had moderate hearing loss and was struggling to reach developmental milestones. Miller saw a physio, occupational therapist and medical experts at Queensland Children's Hospital before being referred for genetic testing. After undergoing whole exome sequencing, they received a likely but not definite diagnosis of SPATA5. Natasha shares the challenges associated with being in this diagnostic grey zone. Please see their full story on our website.
Genetic Epilepsy Team Australia (GETA) Conference - Sydney
Dates: 21 May 11:00 AM - 4:00 PM) and 22 May 9:00 AM - 1:00 PM Family Dinner: 21 May - details TBC Venue: John Beveridge Lecture Theatre, Level 1, Sydney Children's Hospital, Randwick, NSW
We know many of our SWAN families enjoy attending this conference and it is relevant to their SWAN children with epilepsy. Please register to attend the GETA conference 2022 and if you have any questions, please contact Kris Pierce at the Epilepsy Foundation Australia.
COVID Vaccine Information Session for Children Aged 5 - 11 Years Old
Our friends at the Association for Children with a Disability (ACD) have now translated their useful tips to help families from diverse backgrounds access COVID vaccine information. Their fact sheets are available in English, Arabic, Hindi, Chinese and Vietnamese. They include information about Disability Liaison Officers (DLOs) and how they can help families who may need extra support to get their child vaccinated. Find translated resources here.
Help getting the COVID vaccine
Disability Liaison Officers (DLOs) across Victoria provide a free service to help you get your children with disability vaccinated. DLOs can make vaccination easier in a range of ways by assisting with:
- Longer appointments
- Strategies for needle phobia
- Bookings at low sensory and disability accessible centres
- Vaccination in the home
They can help vaccinators understand a child’s additional needs or disability, arrange longer appointments and book vaccinations at low sensory clinics.
Vaccination social scripts – including a new one for children
Social scripts can help your child or young person understand what happens when they get vaccinated. Amaze has produced a range of social scripts on getting the COVID vaccine, including a new one for younger children.
Consumer perspectives needed to improve emergency care
Monash University researchers are recruiting consumers who are parents or carers of children (0-17 years old), to assist in designing research that will be performed in paediatric Emergency Departments across Australia. Your role will be to provide a critical consumer perspective into research investigating how parents or caregivers can have a more active role in their child’s healthcare by helping to earlier identify and alert clinical staff to when the child may be getting worse. The research is planned to occur across a number of major hospitals in Australia and New Zealand.
For more detailed information, please read the study advertisement. If you are interested, write an expression of interest, and email it to: simon.craig@monash.edu Health Concerns of Individuals with Neurofibromatosis 1 Individuals with and without NF1 are are invited to take part in a research study to evaluate cancer worry, anxiety and quality of life for individuals with NF1.
This study involves an online survey which has questions about your experience of NF1 and will take 15-20 minutes to complete. If you would like to participate in this study, please see the survey link. More information can be found at the following invitation.
The study is being undertaken by Associate Professor Yemima Berman and her research team at the Royal North Shore Hospital. If you require more information, please email Dr Jane Fleming or call 02 9463 1727. Supporting Families Through Genomic Testing Parents or legal guardians of children who have had genomic testing since January 2017 are invited to participate in a research study called “Supporting families through genomic testing”. The study aims to understand how genetic services support families of children with rare conditions in Australia. The study involves completing a survey about your experiences with genetics services, including preparing for testing, receiving your child’s genomics results, and any follow-up care provided by genetics services in Australia. The project will help identify what supports are needed and preferred by families. Survey results will be reported back to the study team in an anonymised way to help improve the genomic testing process and genetics services for families going through similar experiences. More information about the study is available at the start of the survey link.
The survey will take approximately 20 minutes to complete and can be completed online by the survey link.
This project is being carried out by the Murdoch Children’s Research Institute (MCRI). The results of this research will be used by Mr George Booker as a partial requirement of the Master of Genetic Counselling degree at the University of Melbourne. For further information about this study, or to ask for a paper copy of the survey, please contact the research supervisors: Michelle de Silva on 03 9936 6109, Elly Lynch on 03 9936 6315 or Anita Gorrie on 03 9594 2026.
Mito Foundation - congratulations!!
Maeve's Law passed the senate at the end of last month. Congratulations to all who were involved, for your hard work and advocacy. The new law means that families with mitochondrial disease can receive mitochondrial donations during IVF. This is a cause for celebration in the broader rare disease community, including SWAN families with rare or suspected mitochondrial conditions. For more information on the story behind Maeve's Law, please see the Mito Foundation website. They will also be holding a webinar on April 27th.
Healthy Trajectories Child and Youth Disability Research Hub - Photoshoot
Professor Christine Imms at the University of Melbourne is leading Healthy Trajectories Child and Youth Disability Research Hub. This research aims to produce research programs that impact the health, wellbeing and social participation of children and youth with disability, and their families.
The research team is looking for families who might like to be part of a photoshoot! The photoshoot will capture images of children, youth and young adults with disability and family members, to capture the Hub’s intent in pictures. If you are interested, please see the photoshoot invitation.
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 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.
assed the senate at the end of last month. Congratulations to all who were involved, for your hard work and advocacy. The new law means that families with mitochondrial disease can receive mitochondrial donations during IVF. This is a cause for celebration in the broader rare disease community, including SWAN families with rare or suspected mitochondrial conditions. For more information on the story behind Maeve's Law, please see the 
