Welcome to our March Newsletter - we are through the shortest month and well and truly in 2022! We have been thinking of our families who have been doing it tough lately, whether that has been those who have been impacted by the floods in NSW and QLD or our members who have had children in hospital. Please let us know if SWAN can support you in any way.
Rare Disease Day Event
We were thrilled to have over 100 people register for our Rare Disease Day Event. Thanks to all who joined us for SWAN's Rare Disease Day event, we hope you found enjoyed the presentations. If you missed the event and would like to listen to the recordings, you can access the presentations through our website. Once again, thank you to our partners for this event, Jane Ellul from Community Junction and Deborah Cameron from Carer Gateway - Wellways Australia, and to our guest presenters: Belinda Donkin-Evers, Dalal Baumgartner, Jane Ellul, Miya St John and Tracy Dudding-Byth. If you missed the event or would like to relisten to the presentations, you can access the recordings through our website.
Consumer Advisory Group (CAG) We sent an email to our members earlier this week who expressed an interest in joining our SWAN Consumer Advisory Group (CAG). If for some reason you have not received an email from us with a Doodle Poll link, and would like to join our CAG, please email or phone me: 0404 280 441 by Monday, 21 March.
New Victorian Disability Plan The new State Disability Plan (2022 - 2026) was launched by the government over the long weekend. The plan focuses on six key areas: Changing attitudes, Transport, Digital inclusion, Assistance animals, Sport and Recreation and Parks and tourism. You can download a copy of the plan here.
Thank you Jenny Downing On the eve of Rare Disease Day, Jenny hosted a creative art class over zoom to raise money for our Hospital Care Packs Program. The evening class provided an opportunity for creative expression which can be an escape for our SWAN parents. In a fun and non-judgmental space, Jenny's participants experimented with lines, shapes and expressive drawing. Meanwhile, Jenny shared her knowledge of different art forms and techniques and explored art as a self-care practice. Thanks, Jenny for sharing your insights and talent!
I was fortunate to be able to talk about SWAN and some of the challenges our families face at Monash Children's Hospital Grand Rounds last month. This was a great opportunity to raise awareness of the support that SWAN offers to clinicians who may not have heard of SWAN before.
I was fortunate to be able to attend and present at the recent ChildUnLtd (formerly Kids to Adults Alliance - K2A) launch. This event was opened by Dr Mike Freelander MP and Dr Katie Allen MP. I also attended the Genetic Support Network Victoria (GSNV) - Rare Event at Victorian Parliament House. It was a wonderful opportunity to listen to stories about research and personal experience and speak with politicians about some of the concerns of SWAN families.
CEO - SWAN Australia
March Events (one upcoming) SWAN informal virtual chat session Wednesday, 23 March - 1:00 pm - 2:00 pm (AEDT)
Please click here to register.
April Events SWAN informal virtual chat session with members who have a SWAN child over 10 years old Wednesday, 6 April - 8:30 pm - 9:30 pm (AEST)
Please click here to register.
SWAN informal virtual chat session Tuesday, 26 April - 8:30 pm - 9:30 pm (AEST)
Please click here to register.
SWAN Portraits Exhibition
The SWAN Portraits Exhibition opened on Rare Disease Day and will run until April 14th.
When artist Crystal Lina met Kat Barlow, a friendship was formed and Crystal wanted to pay forward an act of kindness. They imagined how much it would mean to other families to capture the beauty and diversity of their children. SWAN Portraits ran in person in 2020, and is now brought to you online. Buy a ticket here for access to the story behind the exhibition, artist videos, information on the artists and SWAN children involved and the portraits themselves. Money raised from this exhibition will go towards our hospital care pack program.
Maya shares the story of her joyful, sweet son Lloyd and their family. During his early development, Maya tirelessly advocated for Lloyd and became an expert in his condition. Despite medical advice she received that he was ok, she trusted her instinct that things weren't quite right. After going down the private healthcare path, Lloyd received a diagnosis of IQSEC2, which was an emotional time for Maya and her husband Brendan. They also have a daughter, Elsie. Please see their full story on our website.
Would you like to fundraise for SWAN, or do you know someone who would?
We have lots of fundraising ideas on our website and you can contact Ant at SWAN if you need some more ideas, inspiration and support to fundraise.
You can read Josh's story below and learn how he supported SWAN by making and selling cookies.
"Josh is 15 and as part of his year 9 course work last year, students were given a $10 challenge. The school gave each student $10 start-up money. They were set the task of choosing a charity to support and finding a way to turn their $10 into more!
Josh had no idea which charity to support, but he knew that he wanted to support Australian kids. Josh and his Dad Andrew searched for charities that don’t get a lot of exposure or funding and found SWAN Australia. It felt like a good fit to him, and Josh launched Cookies for a Cause!
It was a labour of love and the money donated to SWAN was a result of many long hours baking and packaging cookies, and selling them to family, friends and classmates. It was a wonderful challenge the school gave them, and Josh found the experience rewarding! I’ve attached a pic of Josh with just a few of his cookies. We calculated Josh probably made over 1000 cookies in the few weeks he fundraised." - Rachel (Josh's Mum)
Steve Waugh Foundation Grant
Children and young adults (0-25 years) with very rare conditions (prevalence 2:100,000) are eligible to apply for the Steve Waugh Foundation Grant which considers funding for:
Some minor house renovations or items that improve the quality of life for the applicant and their family
New SWAN Ambassador - Associate Professor Tracy Dudding-Byth
Introducing Associate Professor Tracy Dudding-Byth, who will now work alongside Associate Professor Sue White as our SWAN ambassadors. Their support assists SWAN with raising awareness and supporting more SWAN families.
Tracy is a full-time consultant clinical geneticist and Director of the NSW Genetics of Learning Disability (GOLD) service. Her clinical and research interests include Neurofibromatosis type 1 and the genetics of intellectual disability and rare diseases.
Tracy spoke at our Rare Disease Day event about the FaceMatch project, an initiative that she leads. One of the challenges faced by researchers is the identification of individuals or families around the world with the same rare disease. As 50% of children with moderate intellectual disability have facial features which provide a clue to diagnosis, FaceMatch uses 2D facial recognition technology to match individuals with known and unknown syndromic forms of intellectual disability.
She also leads the MRFF funded NF1 cutaneous neurofibroma research consortium, and is honoured to sit on the medical advisory committee of the Steve Waugh Foundation, an Australian charity for children with rare diseases. We are thrilled to have Tracy as our new ambassador.
Genetic Epilepsy Team Australia (GETA) Conference - Sydney
Dates: 21 May 11:00 AM - 4:00 PM) and 22 May 9:00 AM - 1:00 PM Family Dinner: 21 May - details TBC Venue: John Beveridge Lecture Theatre, Level 1, Sydney Childrens Hospital, Randwick, NSW
We know many of our SWAN families enjoy attending this conference and it is relevant to their SWAN children with epilepsy. W we will bring you more details as they come to hand next newsletter. In the meantime, if you have any questions, please contact Kris Pierce at the Epilepsy Foundation Australia.
Thank you to those who joined our recent 'Meet the Experts' series this week. The session was presented by Carer Gateway, a government-funded service for carers. Carer Gateway can support carers in the following ways:
One-off practical support e.g. a piece of equipment or planned respite
Supports are based on a case by case basis.
You can access the service by calling 1800 422 737 or visit their website.
COVID Vaccine Information Session for Children Aged 5 - 11 Years Old
Our friends at the Association for Children with a Disability (ACD) have provided us with some useful tips on assisting our children get vaccinated. Our families may find the following information helpful. Please be advised that Victoria as far as we know is the only state that provides Disability Liaision Officers.
Help getting the COVID vaccine
Disability Liaison Officers (DLOs) across Victoria provide a free service to help you get your children with disability vaccinated. DLOs can assist with:
- Longer appointments
- Strategies for needle phobia
- Bookings at low sensory and disability accessible centres
- Vaccination in the home
Second dose after 3 weeks
Children aged 5 to 11 with disability and underlying medical conditions can get their second shot THREE weeks after the first dose (rather than waiting eight weeks). This includes children with Down syndrome, cerebral palsy, muscular dystrophy, autistic children who need frequent assistance with daily living, children with intellectual disability and rare genetic disorders, and children with chronic heart and lung disorders, including children regularly hospitalised with asthma. You can get the second dose at the GP, pharmacy or state vaccination centres. Book here and select an appointment at the three-week dose interval.
Vaccination social scripts – including a new one for children
Social scripts can help your child or young person understand what happens when they get vaccinated. Amaze has produced a range of social scripts on getting the COVID vaccine, including a new one for younger children.
Health Concerns of Individuals with Neurofibromatosis 1 Individuals with and without NF1 are are invited to take part in a research study to evaluate cancer worry, anxiety and quality of life for individuals with NF1.
This study involves an online survey which has questions about your experience of NF1 and will take 15-20 minutes to complete. If you would like to participate in this study, please see the survey link. More information can be found at the following invitation.
The study is being undertaken by Associate Professor Yemima Berman and her research team at the Royal North Shore Hospital. If you require more information, please email Dr Jane Fleming or call 02 9463 1727. Supporting Families Through Genomic Testing Parents or legal guardians of children who have had genomic testing since January 2017 are invited to participate in a research study called “Supporting families through genomic testing”. The study aims to understand how genetic services support families of children with rare conditions in Australia. The study involves completing a survey about your experiences with genetics services, including preparing for testing, receiving your child’s genomics results, and any follow-up care provided by genetics services in Australia. The project will help identify what supports are needed and preferred by families. Survey results will be reported back to the study team in an anonymised way to help improve the genomic testing process and genetics services for families going through similar experiences. More information about the study is available at the start of the survey link.
The survey will take approximately 20 minutes to complete and can be completed online by the survey link.
This project is being carried out by the Murdoch Children’s Research Institute (MCRI). The results of this research will be used by Mr George Booker as a partial requirement of the Master of Genetic Counselling degree at the University of Melbourne. For further information about this study, or to ask for a paper copy of the survey, please contact the research supervisors: Michelle de Silva on 03 9936 6109, Elly Lynch on 03 9936 6315 or Anita Gorrie on 03 9594 2026.
Does your child have a condition that causes childhood dementia?
The Childhood Dementia Advocates Program provides an opportunity for primary carers and former primary carers of children with dementia to share their stories, identify current issues and positively affect change.
All you need to be part of the program is an interest in wanting to make a difference. The Childhood Dementia Initiative and Childhood Dementia Advocates work together to raise awareness of childhood dementia, advocate for investment into research, and influence decision-makers across government and the health and social care sectors.
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 firstname.lastname@example.org the subject line: Support
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.