Being part of SWAN has given our family the opportunity to find other families like ours, who understand what it's like to have a family member with a rare and/or undiagnosed condition. Before SWAN I felt isolated from other families and felt like no one could understand what I was going through, then I found SWAN. SWAN impacts our lives daily, providing support and life long friendships. SWAN provides not only myself and my SWAN child, Lloyd, with support but also my SWAN child’s sibling, Elsie, a chance to have others understand what she is experiencing as she grows up.
Happy birthday SWAN! - Maya Pinn, SWAN mum
Dear Reader,
October is and continues to be a big month at SWAN Aus! We really appreciate you getting involved and helping us spread awareness of Carers Week and Undiagnosed Children's Awareness Day.
As I reflect on the last 10 years, I am proud of how SWAN has grown to support more and more families as well as empower professionals to help SWAN families. I have the phrase, made famous by musician Paul Kelly - "From Little Things Big Things Grow", framed in my office and I sometimes reflect on how we have grown and think about the number of grateful families we have supported over the years. I naively thought I was setting up a small peer support group when I established SWAN and did not think much about the growing impact we continue to have as we raise awareness of children with undiagnosed and rare genetic conditions in our community. We continue to provide information, support, connections, and advocate for SWAN families in the hope that they feel supported and less alone on their journey.
SWAN would like to thank everyone who has been part of our journey with us: families, friends, peers, board members, staff, professionals, sponsors, volunteers and donors. We have put together a montage video to celebrate our 10 years. We just added more SWAN family videos to our website. Many thanks to Maya, Laura and Luke who have recently contributed to our SWAN family video series and to the Victorian Government for their support.
As a 10th birthday gift to our community, we invite you to view the SWAN Portraits Project for free via our website. You can read more about the exhibition in this newsletter. Survey: Sharing Your SWAN Child's Genomic Data
We are interested in the perspectives of SWAN parents/carers on sharing and ownership of their child's genomic data. SWAN has designed a 10 minute survey to help us understand your preferences and the importance of sharing genomic data - who with, how and why. The survey link will go live early next week, so please keep a watch out for it via your SMS alerts and in your inbox.
This survey has not undergone ethics approval. It is entirely voluntary and anonymous. We will present our preliminary findings at the Human Genetic Society of Australasia conference in late November. Responses are due by November 11th. Survey respondents will go into a draw to win a $50 Uber Eats voucher.
Victorian Pilot Peer Support Leaders Program
We recently ran a pilot peer support leaders training program and trained some SWAN members in Victoria to become peer support leaders. The training covered a variety of topics including peer support first aid and mental health first aid, facilitation skills, caring, gender diversity, peer support, and genetics and genomics. Many Victorian families have been contacted by their peer support leader and have already benefited from the peer support of their group. We still have a number of areas in Victoria that do not have a peer support leader in place. We would also like to roll the model of peer support leaders out to other states. Our aim is to offer this training again in some form next year, allowing more SWAN members the chance to become peer support leaders in their area and enabling us to reach more members by offering more targeted peer support.
Please donate to our 10th birthday fundraising cause - Peer Support and Information Officer
Many of you have benefited from talking to Helen, our Peer Support and Information Officer. Unfortunately, we have no ongoing funding for this position. For our 10th birthday, we ask you to donate if you have the capacity, so we can continue offering this service next year and hopefully beyond.
We hope our SWAN families enjoy our 10th birthday celebrations and Undiagnosed Children's Awareness Day festivities.
Best wishes
Heather Renton
Chief Executive Officer and Founder
SWAN Australia
SWAN Portraits Exhibition
The SWAN Portraits Project matched SWAN children with artists from around the world. Artists created portraits from photos of SWAN children, and every SWAN family fortunate to participate in the program has been gifted their child’s portrait to treasure.
Some of you might remember our SWAN Portraits Exhibition we hosted in Sydney in 2020. For Rare Disease Day this year, we brought this beautiful exhibition online. We are excited to gift this to all SWAN members for Undiagnosed Children's Awareness Day and SWAN's 10th Birthday by providing free access to the exhibition. Thank you again to the wonderful artists, children and families behind this exhibition.
NDIS Review
Bill Shorten announced on 18th October a review of the NDIS. You can read more about the review here and subscribe to updates about the consultation process and read the terms of reference.
The Parliamentary Joint Committee on the NDIS plans to hold public hearings in late 2022 and February/March 2023. The committee is particularly interested in hearing from individuals with lived experience of disability, their family members, and their support networks. If you would like to provide a short, spoken statement (approximately 5–10 minutes) before the committee at a hearing, please register your interest below via email or phone with your name, state, phone number and email. Please indicate whether you would prefer to appear in person or via teleconference/videoconference and any accessibility requirements.
Opportunities for individuals to provide short statements in November 2022:
Thursday 3 November (Newcastle)
Friday 4 November (Sydney)
Monday 14 November (Perth)
Thursday 17 November (Geelong)
Friday 18 November (Melbourne)
Friday 25 November (Canberra)
Update on the Medicare Review Advisory Committee (MRAC) submission for a Medicare Benefits Scheme Item Number for Genetic Counsellors
Thank you to those who shared insights and stories about their experience seeing a Genetic Counsellor. We understand that not everyone has been able to access a Genetic Counsellor for their child. Our hope is that a Medicare Benefits Schedule (MBS) item number for Genetic Counsellors will be introduced which expands private practice and makes genetic counselling a more accessible service for our families. You can read our SWAN community advisory groups submission on our website.
Victoria Election Campaign
In this Victorian election, SWAN is advocating for key issues that affect SWAN children and their families. We are calling on the state government to: 1. Improve access to healthcare at Monash Hospital. 2. Make the Caret Card Program (We Care Card) available to two parents. 3. Call for more accessible transport.
We encourage all SWAN Victorian members to write to their local member or candidate about any health, disability or education issues of concern to them. You are welcome to use our template letter as a guide. If you would like any assistance, please contact me at heather@swanaus.org.au or 0404 280 441.
Events
October Events
Undiagnosed Children's Awareness Day and SWAN's 10th Birthday Celebration - Sunday, 23 October Thanks to those who have registered for our events this weekend, you would have received a text update today. The Melbourne event at The Big Goose will go ahead rain, hail or shine (there are undercover areas). If you are not able to attend on the day for an unexpected reason, please call or text Ant (0466 122 290) and she will notify Heather. Unfortunately, largely due to wet weather we have postponed our events around the country with exception of Melbourne. We will be in touch soon to reschedule the events in November.
SWAN bereavement group virtual catch up Wednesday, 26 October - 8:00 - 9:00 PM (AEST)
Please click here to register.
SWAN virtual catch up for parents with SWAN children over 10 Thursday, 27 October - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
November Events
SWAN virtual catch up for all members Thursday, 3 November - 8:00 - 9:00 PM (AEST)
Please click here to register.
SWAN siblings catch up Friday, 4 November - 8:00 - 9:00 PM (AEST)
Please click here to register.
SWAN annual general meeting Sunday, 13 November- 8:00 PM - 9:00 PM (AEST). Please click here to register.
SWAN bereavement group catch up Monday, 14 November - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
SWAN virtual catch up for parents with SWAN children over 10 Wednesday, 16 November - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
Meet the experts series: Anne Cregan Thursday, 1 December - 8:00 PM - 9:30 PM (AEST)
Please click here to register.
Anne Cregan - Partner at Gilbert + Tobin (Master of Criminology, Bachelor of Laws and Arts)
We invite you to our Meet the Experts sessionwith Anne Cregan (see the events section above or register here). This info session will provide information on wills, estate planning and disability trusts.
Anne is a partner in Gilbert + Tobin’s Pro Bono group. One of the group's specialty areas is legal issues affecting people with disabilities. Anne has extensive experience in assisting people who are disadvantaged and marginalised and the organisations working with them across a range of areas of law. Anne has a particular interest in the law as it affects people with cognitive impairment and/or mental illness and has presented and consulted widely on this.
Carers Week (October 16 - 22)
This carers week, we celebrate all the carers who make up our community. On Monday evening, we had Sue Lenzi (carer and mental health social worker) speak to a number of SWAN members. Sue's recorded session will be available to watch on our website soon as part of our Meet the Expert Series videos. Sue raised the point that not everyone chooses to be a carer, but steps up out of necessity. Thinking of all our SWAN members who step up day after day to care for their kids. You may be interested in the following resources from Carers Australia, developed for Carers Week:
Sometimes carers need to connect with others who "get it". If you feel alone, please feel free to email or call a staff member to ask about upcoming events or so we can connect you with SWAN families in your area. We also draw your attention Carer Gateway, a free government program for carers. They offer a number of services including:
To see a summary of their services and supports, please click here.
Joshua Patrick - Carer Story
This week we celebrate all carers of all ages. Josh is 14 years old and was 6 years old we he started caring for his sister Charlotte, who has an undiagnosed condition. Josh is our SWAN siblings ambassador and has been involved with numerous organisations such as Carers Australia and Valuing Children Intiative. Josh enjoys the opportunities that being a carer presents, such as learning Auslan, empathy skills and leadership. He believes that being a true carer is about appreciating the person, making a connection and nurturing their mind, body and soul.
This week, Josh presented to Carers WA and also appeared on 9 News Perth to share his experience caring for Charlotte. Thank you Josh for being such a wonderful role model and ambassador. We are touched by your kindness and leadership.
Congratulations Kris Pierce
Congratulations to Kris Pierce for her recent induction into the 2022 Victorian Honour Roll for Women. Kris holds many positions and she continues to advocate for change for families caring for children with disability and chronic health conditions. Many of you know Kris as a member of SWAN as well as a founding member of GETA (Genetic Epilepsy Team Australia), which she continues to lead today. Kris continues to advocate for positive change for families with rare genetic conditions and epilepsy through her work as the Rare Epilepsy Lead at the Epilepsy Foundation. Kris is also the consumer engagement manager at Child Unlimited which is an Australian network of researchers, clinicians, advocates and families with a shared vision: to improve the clinical care and quality of life of children, adolescents and young adults living with a chronic illness or disability.
Kris is a leading consumer advocate, particularly when it comes to best-practice consumer engagement in research. Kris is involved with many consumer advocate groups and has contributed to positive change on behalf of families and children with epilepsy and rare genetic conditions. Well done Kris!
Child Unlimited Consumer Board
Child Unlimited is a national network of researchers, clinicians, parents and young people dedicated to using research to help children with chronic illness and their families 'live their best lives'.
Child Unlimited is expanding their Consumer Board. They are looking for guidance and direction from young people affected by chronic illness, their parents and other interested members of the community to succeed in their goal of improving the life trajectory of children with chronic illness and their families.
Please see their flyer for more information and email Kris Pierce (Consumer Advocacy and Engagement Manager) to register your interest.
Book a peer support call with Helen, our Peer Support and Information Officer
A number of SWAN members have already spoken with Helen and benefited from her in depth knowledge of disability supports and services.
If you would like to book a free call with Helen at one of her available times, please do so via Calendly. You can access Calendly via our website, or directly by clicking here. You will receive a call at the scheduled time from a 'No Caller ID' number.
Please note that Helen's working hours are varied. If you need any assistance booking a call with her, please contact Ant Howard via email or phone 0466 122 290.
Thank you
Thank you to those who have generously donated to our 10th birthday fundraising campaign to support our peer support and information service.
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.
Emma's Story
Thanks Laura for sharing Emma's story. Emma is a happy girl who makes friends wherever she goes. Since her diagnosis with OHDO Syndrome, Emma has defeated every single odd and she is able to walk and communicate with sign language and say her name. ODHO Syndrome is a rare syndrome which is a mutation of the KAT6B gene that was only recorded in 200 people around the world.
To read more about Emma's story, including details on Laura's book A Very Special Gift, please click here. If you're interested in sharing your child's story, please email Ant. Please see other stories on our website for inspiration.
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
Social Media
You can help us build our network and promote SWAN Australia! Please follow our public Facebook page, Instagram, Twitter and Linkedin and share these accounts with your broader networks. We would love to follow you back too! Please also welcome your family, friends, colleagues and healthcare professionals to subscribe to our free monthly newsletter via our website. By increasing exposure, you are helping us raise awareness and champion SWAN's cause. Thank you!
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 or in-person peer support. The links to all our groups and our Facebook page are below.
This week we celebrate all carers of all ages. Josh is 14 years old and was 6 years old we he started caring for his sister Charlotte, who has an undiagnosed condition. Josh is our SWAN siblings ambassador and has been involved with numerous organisations such as Carers Australia and Valuing Children Intiative. Josh enjoys the opportunities that being a carer presents, such as learning Auslan, empathy skills and leadership. He believes that being a true carer is about appreciating the person, making a connection and nurturing their mind, body and soul.
Congratulations to Kris Pierce for her recent induction into the 2022 Victorian Honour Roll for Women. Kris holds many positions and she continues to advocate for change for families caring for children with disability and chronic health conditions. Many of you know Kris as a member of SWAN as well as a founding member of 
Thanks Laura for sharing Emma's story. Emma is a happy girl who makes friends wherever she goes. Since her diagnosis with OHDO Syndrome, Emma has defeated every single odd and she is able to walk and communicate with sign language and say her name. ODHO Syndrome is a rare syndrome which is a mutation of the KAT6B gene that was only recorded in 200 people around the world.
