See our August edition for SWAN events, advocacy and more.
We know COVID is still rampant in the community so please take care and mask up with N95 masks if you can. The Victorian Government will be providing free masks to vulnerable members of the community over the next month or so. We are hoping other states and the territories will follow Victoria's lead. Each person that presents for either a free rapid antigen or PCR test will receive one box of 10 N95 masks. Please click here for more details.
Once again it has been a busy month with our membership continuously expanding.
I was delighted to be able to recently share both my lived experience and some of the important work SWAN does in supporting our community with some Monash University students. The students are studying the subject Clinical Applications of Genomics as part of the Master of Genome Analytics degree at Monash University. Not only did the presentation raise awareness of SWAN but it also allowed students to reflect on how their future chosen career path has the potential to impact SWAN families.
Congratulations - Dr Kate Holiday
SWAN would like to acknowledge and congratulate Dr Kate Holiday MACN, CCDR’s Chief Executive and Rare & Genetic Disease Telehealth Nurse on her nomination as a finalist in the 2022 Health Minister’s Award for Nursing Trailblazers. The award recognises nurses nationally whose leadership has led to innovative solutions addressing key challenges facing our health and aged care systems. If you would like to learn more about Kate's nomination, you can watch her interview here. We wish Kate every success with her nomination and thank her for her ongoing dedication and commitment to SWAN and rare diseases.
SWAN is part of the Genetic Undiagnosed And Rare Disease (GUARD) Collaborative together with the Genetic Support Network of Victoria and Genetic Alliance Australia. As part of the GUARD collaborative, our SWAN members have access to Kate, our telehealth nurse. If you would like to schedule an appointment with Kate, please do so via this link.
Congratulations - Joshua Patrick
Our SWAN Siblings Ambassador, Josh Patrick, did a TEDX Talk on Saturday, July 30 at Kings Park. An amazing achievement, especially being the youngest ever speaker at the venue! He spoke about his experience of being a teenager, including being a young carer for his sister Charlotte. The TED Talk is yet to be posted on Youtube (stay tuned). Josh followed up his talk with a segment on ABC Radio WA.
If you have a child who is a SWAN sibling and would like to join our SWAN sibs peer support group, please see the details for our next session in the events section below. Please also see the new SWAN Ambassadors page on our website, where Josh features alongside Professor Sue White and Associate Professor Tracy Dudding-Byth.
Finding the Gaps Survey
A couple of weeks ago, you would have received an email inviting you to complete our survey: Finding the Gaps – Access to Australian government funding support for children with undiagnosed or rare genetic conditions.
The University of Melbourne and SWAN Australia are collaborating on this study, funded by the Melbourne Disability Institute. We want to hear from SWAN parents or caregivers about their experience in accessing and maintaining sufficient government funding support (e.g. NDIS, Carers Allowance, Carer Payment), and the impact on these families. The survey should take approximately 15-20 minutes to complete. If you wish to participate in this study, please see the participant sheet for more information and click here to take the survey.
If you have any questions before proceeding, please feel free to email me (firstname.lastname@example.org), the lead researcher Fleur Smith (email@example.com) or Ant (firstname.lastname@example.org).
Grief and Loss Resources
SWAN now has a web page on grief and loss designed to assist parents and caregivers with grief and loss. Many thanks to SWAN volunteer Taylah Williams and Ant Howard (SWAN's Administration Officer) for compiling these resources for us. The web page includes links to various websites, support groups and services, which you can also access via pdf by clicking here. Thank you to SWAN mum Jodi Adams, who has generously shared a song dedicated to her beautiful daughter Cosette, who passed away this year at the age of five. The song was written and recorded by Pat Eaton, Cosette’s brother, and is titled 'Hang On, Wait A Minute'. You can find the song on our web page.
We warmly welcome Helen Johnson as our SWAN Information and Peer Support Officer. This is a short term pilot casual position in which we hope to secure funding to extend the role next year. You can read more about Helen and her role below.
Chief Executive Officer and Founder
Introducing Helen, our new SWAN Information and Peer Support Officer
Helen is a SWAN mum and has also worked and volunteered in the disability sector for over 25 years.
You may have already met Helen at our Meet the Experts session in July, in which she shared her personal experience of supporting her son Ben through finding NDIS capacity building supports for him.
In the new SWAN Information and Peer Support Officer role, Helen will support members in a number of ways:
Provide compassionate support over the phone
Share knowledge they have acquired by raising a SWAN child
Provide updated information in relation to healthcare, disability services and other supports
Refer you to resources, workshops and information sessions that are relevant to you
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.
August Events SWAN informal virtual chat session with members who have a SWAN child over 10 years old
Thursday, 18 August - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
Meet the Experts Series: Libby Roden on grief and bereavement
Wednesday, 24 August - 8:00 PM - 9:00 PM (AEST) Please click here to register.
September Events SWAN TRIVIA NIGHT
Thursday, 1 September - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
SWAN Siblings virtual catch up (primary school aged siblings)
Friday, 2 September - 6:00 PM - 7:00 PM (AEST)
Please click here to register.
SWAN Siblings virtual catch up (high school aged siblings)
Friday, 2 September - 7:00 PM - 8:00 PM (AEST)
Please click here to register.
SWAN informal virtual chat session with members who have a SWAN child over 10 years old
Wednesday, 7 September - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
SWAN bereavement group virtual catch up
Wednesday, 15 September - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
Meet the Experts Series: Dr Kate Thomson Bowe
Thursday, 8 September - 8:00 PM - 9:00 PM (AEST) Please click here to register.
Save the Date Sunday, 23 October - Undiagnosed Children's Awareness Day and SWAN's 10th Birthday Celebration
National events will be announced soon.
Update: Due to the vulnerability of our SWAN children during Winter, with COVID and the flu, we have made the decision not to hold any face-to-face events until further notice. Thanks for your understanding.
Libby Roden - registered counsellor, family support practitioner and family therapist
We invite you to our August Meet the Experts session with Libby Roden (see events section above or register here). This info session will cover grief and bereavement, love and loss, special days, memories and rituals, and looking after yourself.
Libby has worked with Very Special Kids for almost 5 years as a Family Support Practitioner, providing counselling to families, from their child’s diagnosis through to Bereavement. Providing grief and bereavement counselling and support to many of the family members, parents, siblings and grandparents.
Providing opportunities for parents to meet other parents traveling a similar road, through Coffee mornings and Pamper days, facilitating an Online Bereavement program and family events plus more. Libby has worked in the Community Sector for over 25 years and is a qualified registered counsellor.
Kate Thomson Bowe - paediatrician at John Hunter Children’s Hospital
We invite you to our September Meet the Experts session with Kate Thomson Bowe (see events section above or register here). This information session will explore challenging behaviour.
Kate Thomson Bowe is a paediatrician with a passion for disability, improving service delivery and access and moving towards an inclusive and safe community for all. Kate is a Melbournite who trained at the Royal Children's Hospital and worked in Developmental Medicine.
She moved to Newcastle, NSW in 2016 and is the Deputy Head of General Paediatrics at the John Hunter Children’s Hospital and the paediatrician on the Specialised Intellectual Disability Health Team for Hunter New England and the Central Coast.
Updating your details
SWAN members would have received an email from Ant asking you to confirm and/or update their membership details. Thank you to our members who have found the the time to respond.
The purpose of updating our data is to improve support. Examples include connecting families who have the same condition or live in the same area. We also rely on data for general numbers/figures in our advocacy work.
If we did not hear from you by August 7th, we assumed your details were correct. However, please feel free to email Ant at any time if your details change or if you child has now received a diagnosis.
Childhood Dementia Initiative: Introductory session on childhood dementia
In November 2020 Childhood Dementia Initiative launched in response to alarming research that identified more than 70 rare genetic conditions that cause dementia in children. Childhood dementia affects 1 in 2800 babies born in Australia and causes around 90 deaths per year - a similar number to those that die from children's cancer. You can read more on the research here.
Childhood Dementia Initiative invites you to join Head of Programs, Gail Hilton for this two-hour introductory session on childhood dementia. You’ll be equipped with key statistics and a broad understanding of the causes, symptoms and impacts of childhood dementia. Professor Claire Wakefield, Head of the Behavioural Sciences Unit, Sydney Children's Hospital and UNSW and Suzanne Nevin will share recent research findings around the experiences of families caring for a child with dementia.
Event: Childhood Dementia: An Introduction Venue: UNSW CBD Campus, Sydney, NSW 2000 Date: Wednesday 24 August Time: 9:00 - 11:00 AM
This introductory session is ideal for health professionals and social care workers, researchers, parents and policy makers who would like to gain a better understanding of this condition. If you would like to attend this FREE event please register your attendance here. Please feel free to forward this invite to anyone who may be interested.
Family Engagement in Research Course
Healthy Trajectories, our campus Child and Youth Disability Research Hub, has partnered with CanChild, Kids Brain Health Network and McMaster University to deliver their Continuing Education Family Engagement in Research (FER) Course.
This course is for researchers, family members or young adults who are interested in neurodevelopment and/or child health research and want to know more about how to work together as research collaborators. Course completion will be recognised by a McMaster Certificate of Completion.
The course runs from September 19th – November 27th, with four live online sessions on either Wednesdays or Thursdays from 9:30-11:30am (AEST).
There is a maximum participant number of 32 in the course, of which 50% will be family members. The course costs are $500 per participant. There are six scholarships available to cover the costs for family members – please indicate in your application if you wish to be considered for a scholarship.
Please see the course poster and brochure for a summary of the course. If you would like to explore the FER website for more information, please click here. Apply for the course here.
Please note that the application deadline is August 23rd, 2022. Successful applicants will be notified by August 30th, 2022. For further information about the course content, please email: email@example.com
Fundraising for SWAN
Thank you to those who have been involved with fundraising for SWAN!
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.
We are grateful to our SWAN parents who have allowed us to share their stories about their children, which feature in our newsletters and on our website. If you're interested in sharing your child's story, please email Ant. If you would like some inspiration, please see other stories on our website. We would love to include pictures too! Thank you.
Finding the gaps – Access to Australian government funding support for children with undiagnosed or rare genetic conditions
The University of Melbourne and Syndromes Without A Name (SWAN) Australia are collaborating on a study funded by the Melbourne Disability Institute. We want to hear from the parents or caregivers of children with undiagnosed and rare genetic conditions about their experience in accessing and maintaining sufficient government funding support (e.g. NDIS, Carers Allowance, Carer Payment), and how this impacts on these children and their families.
The survey should take approximately 15-20 minutes to complete. Participation is voluntary and you may choose not to answer any question and skip to the next.
If you have any questions before proceeding, you can contact:
Fleur Smith (lead researcher) firstname.lastname@example.org
Heather Renton (SWAN CEO, co-investigator) email@example.com
Ant Howard (SWAN administration officer) firstname.lastname@example.org
Dr Tracy Dudding-Byth is a geneticist and one of our SWAN ambassadors. She is leading the team behind FaceMatch, a project that uses facial recognition technology to improve diagnostic rates for genetic conditions. The software maps faces to detect similarities in people with the same condition. FaceMatch received the Research Australia Data Innovation Award last year.
If your child already has a diagnosis, uploading pictures of their face may help future children find a diagnosis.
If you are searching for a diagnosis, the FaceMatch team will work with you and your doctor to try and find a diagnosis.
Registering in FaceMatch takes around 5-10 minutes, and all data is stored in a private and secure manner. Please see the FaceMatch website for more details.
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
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!
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.