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SWAN Australia - November Update 2020
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EVENT DATES

November

Wednesday, 18 November 8:30pm - 9:30pm (AEST)
SWAN Virtual Chat Session - Informal chat session with SWAN members who have kids over 10 years old
Please register here.

Thursday, 26 November 1:30 pm - 2:30 pm (AEST)
Virtual Meet the Expert Series - How self-care now paid off 'later' with SWAN Mum Abigail Burton
Please register here.
 
Sunday, 29 November: 8:30 pm - 9:30 pm (AEST)
SWAN Virtual Chat Session - Informal chat session with SWAN members 
Please register here.


For security reasons you will be sent the virtual event login details once you have registered for an event.

December

Saturday, 5 December 9:00 am - 3:00 pm

Association for Children with a Disability (ACD) and the Melbourne Zoo have kindly invited SWAN families to Dream Day 2020, a free, fun and accessible day out at the Zoo for families of children with disability. 
Places are limited to 30 families with a maximum of five tickets allocated to each family. Tickets will be allocated on a first in first serve basis.

Please register here.

Sunday, 13 December 3:30 pm - 6:00 pm

SWAN VIC Dad's Catch up - Barefoot bowling
City of Melbourne Bowls Club, Flagstaff Gardens, Dudley St, West Melbourne VIC
Due to current COVID-19 restrictions, we can only have a maximum of 10 SWAN Dads at this event so tickets will be allocated on a first in first serve basis.
Tickets will be strictly non-transferrable and this invitation cannot be shared with families outside of the SWAN community.
Please register here.
CHIEF EXECUTIVE OFFICER'S GREETING

Hi Everyone, 

I hope that everyone's spirits have lifted in Victoria as we head out of lockdown. It has been a tough few months for so many of our SWAN families and those who have experienced hard lockdowns should be proud of their efforts to keep everyone safe. With COVID-19 still prevalent in Australia, we have made the decision to not hold any Festive parties on a large scale but we will try and host some smaller morning/afternoon teas for our members in December (COVID-19 restrictions depending).

Thank you to everyone who attended our Annual General Meeting last month, we had a fabulous turnout and we were grateful to Kate and Mandy from Too Peas in a Podcast for joining us. You can download our 2019-2020 annual report from our website to read about the year's highlights and future plans. Our new board was elected and is made up of:
  • Heather Renton - CEO and Secretary
  • Liz Bishop - Chair
  • Melanie Regan - Deputy Chair
  • John Balaskas - Treasurer
  • Nicole Antonopolous - Ordinary Member
  • Rhiana Spinoso - Ordinary Member
I am keeping this message brief as this newsletter has a lot of information for you:
  • SWAN Events
  • SWAN Kids Virtual Art Exhibition 
  • NDIS Independent Functional Capacity Assessments
  • Patient Pathways Telehealth Nurse
  • Everyone Can Work
  • Rare Disease Now (RDNow)
  • Research Opportunities
  • Rare Disease Photographic Workshop
  • Facebook Groups
     

Stay happy and healthy.

Heather Renton

Chief Executive Officer
SWAN Australia  

SWAN KIDS VIRTUAL ART EXHIBITION

Calling all budding SWAN artists, this is your chance to express yourself through art!

We invite all SWAN parents to submit a photograph of their child's artwork. This will form part of a virtual art exhibition which we will launch leading up to Rare Disease Day (last day in February). Ideally, the artwork will be drawn/painted on an A4 landscape piece of paper and once complete, photographed and the image and consent form emailed to SWAN with "SWAN artwork" in the subject line. All photographs will need to be received by Friday,11 December. Below are some hints on how to best photograph your child's artwork, courtesy of our SWAN photographer Bec Conci. 


Size
A high-resolution image needs to be at least 1MB, preferably 2MB or greater. If the image has KB next to it, it is low resolution it won't be of higher enough quality to be included in the exhibition. 

Light
To reduce the glare in images, the photograph needs to be taken in the shade. Think of an overcast day compared to a cloudy day. A cloudy day has no shadows, and a sunny day has very harsh shadows. So taking a photo by the window will allow the sun through and will usually create shadows or glare if you are shooting through glass. Look at the light in the room, and find a spot that has no shadows - this will be perfect- keeping in mind, you need it light enough to still expose the image correctly.  Sometimes closing a see-through blind can give you perfect soft light.

Angle
To take an image of a flat lay item (drawing) the drawing needs to be completely flat.  You need to have your camera on the direct angle above the drawing so the lines and the angles remain true.  This can be achieved by moving the camera away from your face and directly over the flat lay, or by standing on a small step and leaning over the flat lay. The goal is to have the camera angle the same as the item you are photographing.

The SWAN Kids virtual art exhibition will form part of a bigger virtual art exhibition which is our SWAN portraits virtual exhibition. The SWAN portraits project was put together last year by SWAN Mum Kat Barlow and her friend Crystal Winterton. We had hoped to have toured the exhibited this year but unfortunately, our plans could not go ahead due to COVID-19.

This art exhibition is kindly supported by Illumina.

NDIS INDEPENDENT FUNCTIONAL CAPACITY ASSESSMENTS

SWAN needs your help! The NDIS wants to introduce Independent Functional Capacity Assessments. These assessments are not part of the NDIS we fought so hard to get. We listed our concerns in last months newsletter and encouraged you to take action on the Every Australia Counts website and lobby your local member of parliament. I know a number of you have done this but we need more of our members to tell their stories to their local Federal member and let them know why introducing independent functional capacity assessments is such a bad idea. You can do this by either making an appointment directly with them or emailing them your concerns. We have attached a draft template which includes SWAN's concerns, to make it easy for you. Please email if you would like a Word version of this document. If you don't know who your local Federal member you can search the Parliament of Australia database.

If you would like SWAN to support you with lobbying your local politicians, please email Heather at SWAN.

PATIENT PATHWAYS TELEHEALTH  NURSE - MEET NURSE KATE

You might have read in our October newsletter that SWAN families now have access to Telehealth Patient Pathways Nurse consultations. This is a free and confidential information support service for SWAN families living in Australia. 

We now have the pleasure of introducing Catherine Holliday aka Nurse Kate to you. Nurse Kate is a nurse, researcher and public health practitioner. Her education includes a Bachelor of Nursing degree, a graduate diploma in nutrition, a Masters in Health Promotion, a Masters in Health Science and her PhD thesis investigated the relationship between research and how to translate results into policy, clinical practice and population health. Kate has worked in the health sector for more than 20 years.

Her clinical work has focused on community-based case management and health system navigation, and she has worked as a nurse in Australia and the USA.

To secure an appointment, please complete the booking form on our website and our Patient Pathways Nurse will contact you directly to arrange a time for a consultation. Or if you would prefer you can call directly on 1300 755 050 make an appointment. The Patient Pathways Nurse may be able to assist you with any questions and/or concerns you have including:

  • Questions you may have about your child’s undiagnosed or genetic condition.
  • Emotional support.
  • Information on how to manage life with your SWAN child.
  • How to navigate supports, services and resources that may be able to assist your family with caring for your SWAN child.

I am sure many of our SWAN families will benefit from having access to this service.

EVERYONE CAN WORK

Inclusion Australia has recently launched it's "Everyone Can Work" website. The website's aim is to assist people with intellectual disability, their families and supporters in finding out information about employment for people with intellectual disability in Australia. They are running free online workshops about open employment. These workshops are for people with intellectual disability and their families and include topics such as:

  • Starting young 
  • Work experience
  • Transition planning
  • Changing jobs
RARE DISEASE NOW (RDNow)

Rare Diseases Now (RDNow) is an exciting new initiative to deliver genomic diagnoses and precise, personalised care to children at The Royal Children’s Hospital (RCH), Melbourne. Drawing on the research and clinical expertise at the Murdoch Children's Research Institute and Victorian Clinical Genetics Services, RDNow will establish a pathway for children (who remain undiagnosed after a genomic test such as exome sequencing) to have the best chance of receiving a diagnosis and to access the latest clinical trials and treatments. Funded by the RCH Foundation, RDNow will provide opportunities for families to participate in studies that will a) increase our ability to provide great care and support to children and their families and b) enhance our clinical and scientific knowledge of rare conditions.  If your child or family member is a patient of RCH and has undergone a genomic test but remains undiagnosed, please contact your RCH doctor or genetic counsellor to discuss eligibility for involvement with RDNow.

 RESEARCH OPPORTUNITIES AND CONSUMER ENGAGEMENT WORKSHOPS

Outcomes for children and young people using disability services: A survey for carers
Researchers at Scope, a disability service in Victoria, are testing a survey to explore the impact that services or supports have on children/ young people with disability. The researchers are inviting carers of children/ young people (0-14 years of age) with disability to help them test the survey. Taking part involves carers completing the survey online, which takes about 10 minutes. For more information and to complete the survey, click here. For more details, please contact Caroline Hart 0437 840 684. 


Consumer Engagement Workshop - 13 November 2:00 pm - 4:00 pm
The K2A Alliance is a group of clinicians (health professionals) and researchers from Australia’s leading child health services and research organisations, working together with parents and young people. Their shared mission is to enable children with chronic illness to live their best lives now and into the future. K2A invite you to a take part in a short (2 hour) online workshop, together with a small group of up to 10 other carers with a lived experience of caring for a child with a chronic illness. Please RSVP to Kris Pierce 0408 323 863 by 11 November 2020.

RARE DISEASE PHOTOGRAPHIC WORKSHOP - WA

Genetic and Rare Disease Network (GaRDN) is delighted to announce that they will be running a rare disease photographic workshop with internationally acclaimed photographers Rachel Callander and Nathan Maddigan. Rachel and Nathan will work with a small group, teaching you to capture positivity, joy and beauty with your own photography equipment (even your phone).
 
This is a free workshop. To be part of this wonderful, positive experience all you need to do is register your interest with GaRDN and ten
 lucky people will be selected by raffle to participate. Please note: this is a live workshop, so you need to reside in Western Australia.

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.


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 Grandparents & Carers Group
SWAN Parents with Kids Over 10
SWAN Bereavement Group


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Syndromes Without A Name (SWAN) - Australia · PO Box 390 · Fairfield, Vic 3078 · Australia

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