@TheLoopAus Pleasure!
It's important to note that this is a patient led registery to be "clinical trial ready" and part of the Treat NMD global registry framework. Thank you FSHD Global Research Foundation

@Diane-Gracely Amazing, if you could send as a message over on our Facebook page, we'd love to work with you. https://www.facebook.com/theloopcommunityau

@Sunil I always find useful information when I visit The Loop in relation to navigating to the NDIS. And yes, there are multiple providers that can help us when accessing our NDIS funds, like physiotherapists.

I also go to other resource sites such as the Housing Hub when it comes to looking for new rentals housing and learning about my SDA funds.

Are you a provider yourself, Sunil?

Hopefully by early next year I'll be driving my new everyday chair. I've had my current Quantum 6000z chair for almost a decade now, and will be getting an Ottobock B6R rear-wheel drive chair. Gonna be a bit of an adjustment period going from a mid-wheel drive to a rear-wheel drive again.

Unfortunately I don't have any back-up plan regarding my Cpap machine at night. It's probably something I would need to consider doing in the event of a blackout. When it currently occurs I just take my mask off and try to fall back to sleep, but it's probably not the best fallback option.

A friend of mine works for getaboutable, which is like an aggregate website for accessible traveling and has some features to help with finding accessible accommodation too throughout Australia!

https://www.getaboutable.com/

I realise that I'm about a year and a half late with my contribution to this thread, but hopefully there's some lurkers that might find this info helpful.

Hi Carolyn, I'm so glad it is working out for you. I'm doing okay been a bit busy working on a few projects at the moment. We do need to get more people on here.

Very sorry for the delay, please contact our Client Services Manager, Joan Martin on 0448098744. She has been in touch with a recommended Psychologist who has worked with people with MD and is not too far from the Byron area.

Hi Emma, It looks like you have created a small group for MDWA - you can use this as a place to post messages to each other that only the three of you can see depending on the privacy settings of your group.

@CrazyGardenLady No but it looks amazing have you been able to give it a go?