Dear Reader,

Welcome to our first Spring newsletter. We are looking forward to some face-to-face events this Spring season. It will be wonderful to catch up with SWAN families and see new connections being made.

Undiagnosed Children's Awareness Day (UCAD) and Celebrating 10 Years of SWAN Australia
On Sunday, October 23rd, we will be celebrating UCAD and SWAN Australia's 10th birthday around the country. The main objective of UCAD is to bring families together so they can build connections and raise awareness amongst the wider community and decision-makers about the large numbers of families living without a diagnosis for their child. We are excited to celebrate our 10 year birthday alongside this important annual occasion. Please join us for a celebration in your state, please see our events section below fro details about your state events.

Victoria Election Campaign
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. This includes shorter waiting lists for the genetics service and the introduction of a complex care pathway, which already exists at Royal Children's Hospital.
  2. Make the WeCare carers card available to two parents. Many SWAN families benefit from using this card, but it is currently only available to one parent, as the child's carer.
  3. Improve access to public transport. We are asking for more low platforms trams, particularly on routes 58 and 59 which stop outside the Royal Children's Hospital.
We will send the campaign out to Victorian members shortly so that you have the option to personalise our template and send it to your local MP. 

Support the HGSA's application for an MBS item number for genetic counsellors
The Human Genetics Society of Australasia (HGSA) has applied for a Medicare Benefits Schedule (MBS) item number for genetic counsellors. We believe that better access to genetic counsellors will benefit SWAN families. Please see more information below about how you can provide feedback to the MBS Review Advisory Committee and support the HGSA's application.

We hope our SWAN families enjoy the school holiday break.

Best wishes,

Heather Renton
Chief Executive Officer and Founder
SWAN Australia
Undiagnosed Children's Awareness Day (UCAD) and 10 Years of SWAN Australia!

On Sunday, October 23rd, we will be celebrating UCAD and SWAN Australia's 10th birthday around the country. Please see the events section below to register for your state's event.

Would you like to feature in SWAN's birthday card? We are looking for photos of SWAN children/families, and birthday-themed drawings by SWAN children/siblings. If you would like to include a message too, here are some prompts to get you thinking:
  • The best thing about having a SWAN child/sibling is…
  • What I've learnt about being a SWAN parent/carer/sibling is...
  • Being part of SWAN means...
  • Without the support of the SWAN community, I would feel...
  • To me, peer support means...
  • The hospital care packs program makes a difference…
Please email your photos, drawings and messages to Ant and attach the following photo consent form so we can post the birthday card on our website and social media platforms. Thank you!

October Events

SWAN Siblings virtual catch up
Sunday, 2 October - 8:00 PM - 9:00 PM (AEST)
Please click here to register.

SWAN informal virtual catch up
Wednesday, 12 October - 8:00 PM - 9:00 PM (AEST)
Please click here to register.

Meet the Experts session - Sue Lenzi
Monday, 17 October - 8:00 PM - 9:00 PM (AEST)
Please click here to register.

Undiagnosed Children's Awareness Day and SWAN's 10th Birthday Celebration
Sunday, 23 October - lunch in Melbourne and morning tea picnics in other cities
  • Melbourne - The Big Goose, 10:00 AM - 4:00 PM.
    Please click here to register.
  • Sydney - Livvi's Place Five Dock, 10:00 AM - 12:00 PM. 
    Please click here to register.
  • Newcastle - Blackbutt Nature Reserve, 10:00 AM - 12:00 PM.
    Please click here to register.
  • Brisbane - The Hills District All Abilities Playground, 10:00 AM - 12:00 PM.
    Please click here to register.
  • Gold Coast - Kurrawa All Abilities Playground, 10:00 AM - 12:00 PM.
    Please click here to register.
  • Perth - Woodbridge Riverside Park, 10:00 AM - 12:00 PM.
    Please click here to register.
  • Adelaide - St Clair Recreation Precinct Playspace, 10:00 AM - 12:00 PM.
    Please click here to register.
  • Canberra - Boundless Playground, 10:00 AM - 12:00 PM.
    Please click here to register.
  • Launceston - Riverbend Park, 10:00 AM - 12:00 PM.
    Please click here to register.
  • Hobart - Simmons Park, 10:00 AM - 12:00 PM.
    Please click here to register.
  • Darwin - Bicentennial Park Play Space, 10:00 AM - 12:00 PM. Please click here to register.
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.

SWAN Annual General Meeting
Sunday, 13 November
- 8:00 PM - 9:00 PM (AEST) Please click here to register to come to our annual meeting.

More details and formal invitations will follow next month.
Support the HGSA's application for an MBS item number for genetic counsellors

The Human Genetic Society of Australasia (HGSA) has applied for a Medicare Benefits Schedule (MBS) item number for genetic counsellors. The application is currently under consideration by the MBS Review Advisory Committee (MRAC) committee. If the application is successful, this means that genetic counsellors will become a more accessible service to Australians.
The MRAC - Genetic Counselling Working Group Draft Final Report is now available for public consultation. You can support the HGSA's application by providing feedback to the MRAC as it finalises its recommendations to Government. Information on making a submission can be found here. Submissions and questions can be sent to MBSContinuousReview@health, until 11:59 PM 7 October 2022.

While there is no formal template or structure for individuals or organisations wishing to provide feedback, the questions from the previous stakeholder consultation may provide some guidance. The HGSA response to the stakeholder questions and draft report, as well as the original HGSA submission, can be found here.

If you have any questions, or would like assistance with a response you are welcome to contact Lauren Hunt and Amy Pearn.

We believe that an MBS item number for genetic counsellors with benefit SWAN families. Thanks in advance to those who write a submission in support of the HGSA's application. 
October Meet the Expert Series - Caring

We invite you to our October Meet the Experts session with Sue Lenzi (see events section above or register here). This info session will cover mental health for carers, during carers week.

Sue Lenzi is a Mental Health Social Worker with over 40 years of experience, over 10 of those in private practice. Sue started in Child Protection and the Justice Department and then spent 20 years with Anglicare working with homeless youth.

Sue is based in Victoria where she provides counselling for a variety of clients, children and adults who are experiencing difficulties in their lives. For over 10 years, Sue has passionately facilitated a playgroup that caters for families who care for children with disabilities and chronic health conditions.  
Our Condolences

We are thinking of two of our SWAN families, whose children - Rye Johson and Thomas Dart-Stone, passed away last month. 

Brooke Johnson and Rhys have been part of our SWAN community for a number of years. Rye will be sadly missed by his family and his community. Our deepest condolences go out to Brooke, Rhys, Jed and Bowie as we continue to think of them at this sad and difficult time.

We are thinking of Naomi and Marc and their other children Jack and Matilda and their extended family and this difficult time. Although Thomas's life was short, his presence touched many and our sympathies go out to all that knew him. 
Book a peer support call with Helen, our Peer Support and Information Officer
A number of SWAN members have already benefited from talking with Helen and benefited from her in depth knowledge of disability support 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.
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.

Updating your details

Please let us know if you move house or receive any updates on your child's diagnosis, so we can provide you with up-to-date support (e.g. connect you with families who have the same condition or live in your area). We also rely on accurate data for our advocacy work.

Please feel free to email Ant at any time if your details change.
Marrium's Story
Thanks Angela for sharing Marrium's story. Marrium Valentina (Maz) is 18 years old and was diagnosed with Smith Kingsmore Syndrome after 16 years of searching for answers. It has been a challenging and slow journey for Angelina, Marrium and their family. Marrium is an enthusiastic young woman who enjoys life. To read Angelina and Marrium's story, please click here.

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. Thank you.
Research Opportunities

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 with 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.

State-based closed SWAN Facebook groups:

SWAN NSW and ACT Support Group
SWAN QLD and NT Support Group
SWAN SA Support Group
SWAN TAS Support Group
SWAN VIC Support Group
SWAN WA Support Group

Other SWAN closed Facebook groups:
SWAN Australia Support Group (our national Facebook group that many families are members of already)
SWAN Siblings
SWAN Grandparents & Carers Group
SWAN Parents with Kids Over 10
SWAN Bereavement Group

SWAN Facebook Page

Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.

Copyright © 2022 Syndromes Without A Name (SWAN) Australia. All rights reserved.
Our mailing address is: SWAN Australia, PO Box 390, Fairfield, VIC 3078
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