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Happy New Year!! I hope that you have all had an enjoyable festive season and a restful holiday. I am so pleased that we now have three groups of consumer advisors to take us forward into the New Year. CP Unite is well-established and is providing such useful input, and we now have both a group of adolescents with cerebral palsy (called CP-Voice) and a Parent Advisory Group. Thank you to all those young people with cerebral palsy and their families who are assisting us in our research endeavours and thanks also to our mentors whose role is so important.
We are excited that the major international conference “Better Together 2022” will soon be here, hosted by the Australasian Academy of Cerebral Palsy and Developmental Medicine and the International Alliance of Academies of Childhood Disability. It is not too late to register to attend the conference which will be entirely virtual and very informative.
Our Webinars commence again on Monday 31st January and occur monthly. Look out for the upcoming topics in this newsletter.
We were sad to farewell Robbie Eres but he will continue in an honorary role. His successor, Sarah Giles, will commence in April. Iain Dutia has also achieved a lectureship position at the Australian Catholic University. Fortunately, he will be continuing in an honorary role with us to continue his research effort. Look out for a new opportunity to apply for a postdoctoral position focussing on physical health. Finally, we will be farewelling Kari at the end of February. She has done an amazing job with her great talents and excellent networking skills and will be sorely missed. We have interviewed for her replacement and are currently doing reference checks.
I look forward our work in 2022 when hopefully we can make a difference for young people with cerebral palsy.
Meet our New Advisors and Mentors!
CP-Achieve is delighted to have three groups of consumer advisors working with us: CP Unite (Young Adults with CP, 17-30 years old), CP Voice (Adolescents with CP, aged 10-18 years old) and a Parent Advisory Group. We also have mentors who volunteer to collaborate with and support CP-Unite and CP-Voice. Meet some of the team here via the button below!
Children as research partners!
Learn more about children advising researchers about CP research
We are researchers from ACU who want to do research WITH children and adolescents with cerebral palsy, not only on them or about them. We asked 17 children and adolescents with cerebral palsy, aged 8 to 18 years, what they thought about the best ways to work together as research partners. Now we would like to share this information with young people, their families and other researchers to make sure all cerebral palsy research can benefit from the views and expertise of the young people involved.
You can find the great resource we developed with young people with cerebral palsy by clicking here:
The full publication of the study here:
Here is a 15-minute webinar about how the resource was developed:
Click this link to make contact with the lead researcher from ACU, Margaret Wallen
What did the young people say? Young people gave great advice and ideas about working with researchers as research partners. Young people can make research better.
Children and young people told us: · They have insider knowledge – that is, special knowledge about living with CP that researchers didn’t have. · This insider knowledge could really help make research better - more relevant and useful for young people.
Communication is very important. Children and young people told us:
· They need to really know the roles they are undertaking and what is expected of them. · It was important that they were listened to, and their advice taken seriously. · They mostly preferred face to face meetings with researchers in a group with other young people to give their input to research. This research was before the COVID-19 pandemic · One-on-one meetings might be better for some young people, so researchers need to be flexible and find out what works for individual young people. · Remote communications could work well especially so people who lived outside cities or who couldn’t travel could be involved · Keeping in touch and up-to-date between meetings was important to stay connected with the research and remote communications would help this. · Young people are all different – different ages, stages, abilities, interests and strengths. Communication methods would need to be tailored to make sure that young people who wanted to be involved, could be involved.
There are logistics. Children and young people told us: ·
Payment was an important thing to consider. · Food and drink were necessary parts of meetings · To acknowledge their involvement – put their names on websites, publications, and presentations · Challenges to being involved as a research partner needed solutions - limited time, difficulties travelling and reliance on parents for travel and support.
Young people could be involved in all parts of research. Children and young people told us:
· They could have many roles, right from deciding the best topics to research all the way through to sharing research findings in creative and appropriate ways. · They might be involved in one or two parts of the research, or in all stages. · Their involvement would be better if it could be flexible – around busy lives and times, and their strengths and interests. · They would need support and encouragement to be a research partner.
Understand motivators to be involved. · Children and young people told us there were different reasons for working with researchers and sharing their insider knowledge.
· Some young people want to help other young people with CP by making research better. · Others said they would benefit by being involved in research – it could give a sense of purpose and something to be proud of. · Others would simply be interested in working with researcher.
Experts in Our Health Workshop
Date: Wed. 16th February 2022
Time: 11AM – 1PM
The Experts in Our Health Project aims to empower women with disabilities to improve our knowledge, choice and control over our access to health services. It aims to empower women to participate in the promotion and governance of accessible women’s health services. The workshop is free!
This training session is designed to support women with disabilities to:
- Understand what accessible healthcare is and learn about our health rights.
- Find our way around health services and systems.
- Learn about how to advocate for ourselves in a health setting and;
- Advocate for accessible health services for all women with disabilities.
You must be:
- A women, trans, non-binary, or gender diverse
- Identify as having a disability
- 17 years old and older
Better Together 2022 - Counting Down to the Conference!
It's not too late to get on board for the 11th Australasian Academy of Cerebral Palsy and Developmental Medicine and the 3rd International Alliance of Academies of Childhood Disability 'Better Together' Conference 2022.
CP-Achieve Webinar Series: Join us on January 31st 2022 at 5pm!
In this 30-minute webinar, Stephanie will be speaking about Implementation Research, looking at getting what we know we should be doing into practice! Stephanie is a qualitative and mixed methods health services researcher currently embedded with Australian Genomics at the Murdoch Children’s Research Institute in Melbourne. At MCRI she is working with clinicians, service leads and community advocates leading research into the implementation of genomics in clinical practice.
CP-Achieve Webinar Series: Join us on February 14th 2022 at 5pm!
In this 30-minute webinar, Isabelle Stevenson and Georgia Gardner will be discussing the Carer Gateway program across Victoria. In their roles as Service Development and Promotion Officers at Merri Health, they promote the Carer Gateway, coordinate engagement activities across local service providers and manage projects which aim to engage unpaid family, friend or partner carers in Victoria. Largely, Isabelle focuses on regional and rural Victoria and Georgia focuses on Metropolitan Melbourne.
2022 Photo Exhibition Submission: VOTING NOW OPEN!
We are proud to announce that the 2022 AusACPDM and CP-Achieve Photo Exhibition is now live.
We invited people with lived experience of cerebral palsy and childhood disability to submit photos of themselves or their loved ones under the following categories: Family, Fun, Fitness and Friends.
We have received 24 high quality submissions from a diverse group of photographers and directors of photography, showcasing depth of talent and creativity.
There is a chance for our entrants to win one of four $100 prizes by popular vote (one prize per category). Please visit the exhibition above to view and vote for the photos. You may vote for one photo per category.
Voting closes midnight Thursday 24th February 2022 and winners will be announced at Better Together 2022 on Friday 4 March.
Join the GSNV in celebration of Rare Disease Day with a virtual journey to focus on “Global Themes, Local Action”
Date and time
Mon, 28 February 2022 10:00 AM – 1:30 PM AEDT
The event will open with a brief introduction from the Genetic Support Network of Victoria CEO Monica Ferrie, before the morning session shares with you all a series of conversations presented by international rare disease experts from Rare Disease International (RDI), Rare Diseases Europe (EURORDIS), Genetic Alliance America & UK and Asia Pacific Alliance of Rare Disease Organisations (APARDO), and Director of the Murdoch Children's Research Institute Kathryn North.
As experts in rare disease across the globe they will share with us their perspective on the challenges facing the Australian rare disease landscape in 2022 and create the framework for our afternoon workshop session.
Source Kids Disability Expo, Sydney ICC on 26-27 March 2022!
This expo will showcase the latest products, services and technology designed for children, youth and young adults living with a disability.
When: Saturday 26 March 2022, 10am to 4pm; Sunday 27 March 2022, 10am to 3pm
Where: Sydney ICC
Cost: Tickets are free.
A Neuro Physio Podcast: Professor Prue Morgan
Prue will be speaking on topics such as her career path, filling the gaps in CP care, key principles of working with CP, barriers to participation in CP, developing evaluation skills in students and committee work and taking opportunities
We have filmed a couple of our team members, click on the videos below to hear them speak!
Meet Margaret Wallen: CP-Achieve Chief Investigator
Meet Jane Tracy: CP-Achieve Associate Investigator
See more below!
have a question?
We’re happy to help with any questions you might have. Check out more information on our socials linked below!
