We hope you and your family are keeping well this Winter.
Dear Reader,
Welcome to our July Newsletter and the second half of 2022! I hope that you are keeping well and staying warm this Winter.
New Members
I would like to say a particular welcome to new members and remind you that you can register for upcoming events through the newsletter (events section below) or via our website. We have monthly Meet the Experts sessions and informal catch-ups for members. This year we have started SWAN siblings, hosted by Josh Patrick on the first Friday or Sunday of each month. If your child would like to connect with other siblings, they can register via the links below (events section), or you can register on their behalf.
Advocacy
It was great to have the opportunity to meet with Federal Senator Jess Walsh this month. Jess is a valued supporter of our work and is going to follow up on some of the key issues for SWAN families.
Last year we supported an application by the Human Genetics Society of Australasia for genetic counsellors to be granted a Medicare Item Number. This means that the government would subsidise the cost of a genetic counselling service. We were pleased to provide feedback on the Commonwealth Department of Health Medicare Benefits Schedule Review Advisory Committee Genetic Counselling Working Group Findings Report. We believe that genetic counsellors will be more accessible in both public and private settings if this application is granted. You can review our response on our website.
Coming Up
SWAN is working on some resources for members regarding advocacy and transitions (in education, healthcare and accessing disability services). We are looking forward to celebrating our ten year anniversary in October together with Undiagnosed Children's Awareness Day. We will keep you posted about our celebration plans.
Wishing everyone COVID, flu and cold-free weeks ahead.
Best wishes,
Heather Renton
Chief Executive Officer and Founder
SWAN Australia
Events
July Events SWAN bereavement group virtual catch up
Wednesday, 20 July - 8:00 PM - 9:00 PM (AEST) Please click here to register.
Meet the Experts Series: Helen Johnson on independent living skills
Thursday, 21 July - 8:00 PM - 9:00 PM (AEST) Please click here to register.
SWAN informal virtual chat session with members who have a SWAN child over 10 years old
Thursday, 28 July - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
August Events SWAN Siblings virtual catch up (primary school aged siblings)
Sunday, 7 August - 6:00 PM - 7:00 PM (AEST)
Please click here to register.
SWAN Siblings virtual catch up (high school aged siblings)
Sunday, 7 August - 7:00 PM - 8:00 PM (AEST)
Please click here to register.
SWAN informal virtual chat session
Wednesday, 10 August - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
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.
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.
Updating your details
SWAN members will receive an email from Ant soon, requesting members to update their contact details and information so we can update our database. To help tailor support, we like to keep an accurate record of your contact details and whether your child's situation has changed regarding their diagnosis. One of the ways we tailor support is to regularly search our database so we can connect families who have children with the same condition so they can share information and support one another.
We recently had a request to connect families who have multiple children with rare genetic conditions. If this applies to your family, please email Ant to let her know whether your children have the same or different conditions.
Helen Johnson - SWAN mum and State-wide Educate Facilitator for ACD
We invite you to our July Meet the Experts session with Helen Johnson (see events section above). This info session is about helping teenagers and young people with disability develop independent living skills.
Helen, her husband Peter and their 2 sons, Jayden and Ben, live in regional Victoria. Their youngest son Ben, now 28 years old, was born with an extremely rare syndrome causing multiple, severe and profound disabilities. At 16 years old he also became a paraplegic due to an unexplained, post-operative, incomplete Spinal Cord Injury (SCI).
Helen has also worked in the disability sector for over 25 years and volunteered in the ‘Carer’ sector for decades. Helen looks forward to discussing with SWAN members the importance of identifying your own child’s strengths likes & dislikes. To be innovative, and with the support of the NDIS, to build your child’s capacity in daily independence, to access Community, and recreational opportunities and to always aim towards a meaningful day.
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). 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.
Special Children's Christmas Parties
A reminder to RSVP to this year's Special Children's Christmas Party by Friday, 12 August. If you are interested, please email Ant at our events email address: events@swanaus.org.au.Please state your child’s name, sex, state and the age group you would like the present for e.g. for child aged:0-2, 3-4, 5-6, 7-9 or 10-12 years of age. Please note these invitations are only for SWAN children 12 years and under.
Please note only ONE child and parent/carer can attend on each invitation. There will be no child minding facilities available. Siblings under the age of 3 are welcome but they will not receive a present. We will then get in touch with the organisers of the Christmas Party to register your interest and perhaps you might be lucky to receive an invitation!
Melbourne Special Children's Christmas Party
Saturday 26th November, 10:30 AM until 2:00 PM at Melbourne Showgrounds.
Sydney Special Children's Christmas Party
Wednesday 30th November, 10:30 AM until 2:30 PM at Rosehill Gardens Racecourse.
Brisbane Special Children's Christmas Party
Saturday 10th December, 10:30 AM until 2:00 PM at Brisbane Convention & Exhibition Centre.
Perth Special Children's Christmas Party
Saturday 12th November, 10:30 AM until 2:30 PM at the Perth Convention & Exhibition Centre.
Adelaide Special Children's Christmas Party
Saturday 19th November, 10:30 AM until 2:30 PM at Morphettville Racecourse.
Launceston Children's Christmas Party
Saturday, 7th December, at the Launceston Silver Dome - times to be confirmed.
Thank you to those who donated!
Thank you to our members and donors who made a tax time donation to SWAN and to those who shared our social media content with their own networks. We truly appreciate your generosity and support!
We would like to especially thank Sarah Strachan, whose daughter Hannah was the face of our donation campaign. Thank you, Sarah, for representing SWAN families and allowing us to share your story. It's much appreciated.
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.
Parent Stories
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.
FaceMatch
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.
Research Opportunities
We Want to Know About Paid Participation in Consumer Engagement
The Genetic Support Network of Victoria welcomes your input as a member of the genetic, undiagnosed and rare disease community in developing a transparent policy pertaining to payment, or non-payment, for participation in projects involving people living with, or caring for someone with a rare disease.
Your feedback in this survey will guide the development of a position statement that will be the foundation for fairness and integrity when working alongside our friends in the rare disease sector in future projects. The questions are deigned to gain an insight into the expectation of the rare disease patient and carer population so that we can engage them in our projects authentically and respectfully.
If you have any questions relating to paid payment for consumers, please contact Isaac Hockey, Project and Policy Assistant at Isaac.hockey@vcgs.org.au.
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.
Helen, her husband Peter and their 2 sons, Jayden and Ben, live in regional Victoria. Their youngest son Ben, now 28 years old, was born with an extremely rare syndrome causing multiple, severe and profound disabilities. At 16 years old he also became a paraplegic due to an unexplained, post-operative, incomplete Spinal Cord Injury (SCI).
