Have Your Say

Share your thoughts, take part in online discussions, voting polls, surveys and consultations via the links below.

We encourage you to get involved as it’s so important for you to have your say and give feedback as it guides and develops approaches to delivery of improved outcomes to the neuromuscular community.

We’ll update this page as new ways to have your say are sent to us to share with you. Please note that most of these consultations/surveys/calls for participation are not put together by Neuromuscular WA so you will need to follow the links through to find out how to get involved.

jason-rosewell-ASKeuOZqhYU-unsplash.jpg

RESEARCH: IMPACTS OF PROVIDING UNPAID CARE TO SOMEONE WITH DUCHENNE MUSCULAR DYSTROPHY

Facilitated by Curtin University

Curtin University is looking for individuals who are currently or have previously provided unpaid care to someone with Duchenne muscular dystrophy. This research project aims to gain insights into carers' perspectives on interventions that could help promote psychological well-being.

The research seeks to better understand the challenges faced by carers and how support programs may be tailored to meet their needs.

What: Participate in promoting psychological wellbeing for carers
Where: Curtin University or online
When: Ongoing

For more info, please contact James Clare at james.clarke1@curtin.edu.au

RESEARCH: Participation in children and teenagers with a neuromuscular condition

Facilitated by Telethon Kids Insititute

Researchers at the Telethon Kids Institute would like to talk with children and teenagers aged 5 to 18 years and their parents about how they participate at home or school and in the community. This will help them to better understand what helps or are barriers to participation. They will also learn how to support children to participate in activities that are meaningful to them.

What: Participation in children and teenagers with a neuromuscular condition
Where: Telethon Kids Institute
When: Ongoing

For more info, please contact Associate Professor Jenny Downs on 0411 161 138 or at jenny.downs@telethonkids.org.au / neuromuscularresearch.SMB@telethonkids.org.au

research: Respiratory health and sleep in the lives of children and teenagers with a neuromuscular condition

Facilitated by Telethon Kids Institute

The research team at Telethon Kids Institute would like to invite children aged 5 to 18 years with a neuromuscular disorder and their caregiver to take part in an interview study. We would like to talk to you about your daily lived experiences specifically relating to respiratory health and sleep. We aim to better understand how children’s lives are affected by their respiratory health and sleep.

What: Respiratory health and sleep in the lives of children and teenagers with a neuromuscular condition
Where: Telethon Kids Institute
When: Ongoing

For more info, please contact Associate Professor Jenny Downs on 0411 161 138 or at jenny.downs@telethonkids.org.au / neuromuscularresearch.SMB@telethonkids.org.au

ParticiPANT FIRST: HELP SHApE THE NDIS

Facilitated by the NDIS

The NDIS are seeking nominations from participants, families and carers to help improve their policies, services, templates and more. Part of their Participant First Engagement Initiative, they are looking to engage with participants about the best ways to improve their approach. By filling out an information form on their website, you’ll be able to choose between three levels of commitment. The first involves online and email feedback. The second involves one-on-one or small group discussions. The third sees you working directly with project teams to design a product or policy.

What: Participate in shaping the NDIS
Where: Online
When: Ongoing

For more info, please visit the NDIS website.