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April 2021: CP-Achieve Newsletter
Greetings to you all and I hope that you enjoy reading the April 2021 newsletter.
Have you registered for the Symposium yet? It is on 17 and 18 June and is a joint initiative with the Australasian Academy of Cerebral Palsy and Developmental Medicine. The theme “Collaborate, Innovate, Achieve” has been chosen. The organising team have managed to enlist some great speakers including people with disability along with presenters from Australia and overseas. Thanks are due to our Organising Committee – Kari Klein, Stacey Cleary, Robbie Eres, Nora Shields and Margaret Wallen from our team, and Pam Thomason, Kirsty Stewart, Sian Williams and Gaela Kilgour from AusACPDM. They are all working so hard to make this a great event.
Currently we are building consumer involvement in CP-Achieve. CP-Unite, our team of young adults aged 17-30 years, is doing amazing work in guiding the research agenda, and we consult with them on a regular basis. We are now inviting parents, adolescents and adults to work with us on projects and working groups. We would appreciate your help if you have the time to assist us with this. This newsletter contains more information about these opportunities to become more involved in CP-Achieve.
Over the past month we have been busy recruiting for new PhD students. More details of successful applicants will be available soon.
There are several research updates in this newsletter and I encourage you to read them.
I hope you enjoy reading this newsletter. Please be in touch with us if you have ideas, thoughts about CP-Achieve or items for upcoming editions.
Dinah Reddihough, CP-Achieve Principal Investigator
Young people with cerebral palsy aged 10 to 30 years:
CP-Achieve NEEDS YOU!
Are you passionate about making a difference to the health and life
outcomes for young people with cerebral palsy in Australia?
You could advise researchers how to do research about cerebral palsy!
CP-Achieve invites you to join a project – we would like to work together to make research better for adolescents and young adults with cerebral palsy.
Go to our website to find out more about CP-Achieve and positions available for adolescents and young adults with cerebral palsy in projects. It is your knowledge about being a young person with cerebral palsy that is important to us. You do not need to know anything about research. Click here to go to our website: https://www.cp-achieve.org.au/consumer-advisory-groups/adolescents-and-young-adults/
CP-Achieve wants to make sure that we carry out research which will make an important impact on the lives of young people with cerebral palsy and their parents and families. CP Achieve needs your expertise!
We invite YOU to join one of CP-Achieve’s teams. Keep reading to hear about CP-Achieve and positions available for parents and family members of adolescents and young adults with cerebral palsy. It is your knowledge about being a parent that is important to us. You do not need to know anything about research.
Does this describe you?
• A parent or family member who has opinions to share about what is important in cerebral palsy
• Interested in influencing research in the field of cerebral palsy
• Enjoys working in an engaging and supportive team
• Willing to give 2 to 3 paid hours per month
To find out more click here: https://www.cp-achieve.org.au/consumer-advisory-groups/parents-of-adolescents-or-young-adults-with-cerebral-palsy/
Exploring The Impact of Myotonic Dystrophy Type I Diagnosis On Intimate Relationships: Couple Coping and Communication
We are interested to explore the impact of Myotonic Dystrophy (DM1) on Australian couple relationships.
There is very little research exploring the experiences of couples after a DM1 diagnosis in one of the partners, and not much is known about how partners talk about and cope with the condition.
We would be interested to hear from you if you:
- are 18 years or older,
- have received a clinical or genetic diagnosis of myotonic dystrophy,
- are in a relationship.
Contact Radi to find out how to enrol in the study:
T: 044 986 9185, Email: Radostina.breedt@petermac.org
The study is conducted by Radi Breedt, a graduate of the Master of Genetic Counselling Program at the University of Melbourne as a requirement for completing of her degree.
Approved by the University of Melbourne Ethics Committee (ID 1955968.1)
Have you or others you work with previously supported cycling opportunities for children and young people with disability who use an adapted bike or trike?
Physiotherapy and occupational therapy researchers from the University of Melbourne and La Trobe University are interested in finding out more about how different practitioners support, deliver and recommend adapted bike and trike equipment and training across Australia.
We are inviting occupational therapists, physiotherapists, teachers (special education and mainstream health and physical education), cycling coaches (cycling and triathlon) and sports and recreation practitioners to participate in an online survey lasting 15-20 minutes to document their prior experiences of providing adapted cycling interventions.
To find out more about this survey, check your eligibility and choose to be involved in the study, please follow the following link:
https://redcap.link/adaptedcyclingpractices
If you would like further information about this project please contact Dr Rachel Toovey (email: r.toovey@unimelb.edu.au) or Mr John Carey (email: jjcarey@student.unimelb.edu.au).
Jooay Australia
is a free app and Facebook page that helps connect children, youth and adults with disabilities with sport and leisure activities in their community. This resource shows activities local to you, but also all across the country. It lets you find activities based on your individual needs and preferences with specific filters.
The Jooay app is free to download and use, and is available on the App store and Google Play. Almost 650 Australian activities are now listed on the app and it's ready for our families and community to take full advantage of this platform and start using it. For more information contact: Jooay@cerebralpalsy.org.au
Once you have checked out Jooay, do send your feedback here:
https://survey.az1.qualtrics.com/jfe/form/SV_erpgkB8 kq8jMhPD
have a question?
We’re happy to help with any questions you might have. Check out more information on our socials linked below!
