Welcome from the CEO

Welcome to your April edition of Talking Point! 

I'd like to start with a big THANK YOU to the hundreds of community members who came along to our annual Big Red Roll + Stroll on Sunday, 19 March, at Parramatta Park. I can confirm the day was a was a HUGE success. 

The park was filled with excitement, energy, and enthusiasm as participants enjoyed the activities and interacted with each other. A special thank you to our Patron and Governor of NSW, Her Excellency The Hon Margaret Beazley AC KC, for participating in the event and engaging with so many members of our community.

Thank you also to our new President, Robert Fraser, for your support and speech at the closing ceremony, and to all of our amazing partners and sponsors who helped make the day so successful! Together, we’ve raised $73,861 for our neuromuscular community! Thank you all so much!

We have a lot happening over the next few months in our programs, so I encourage you to download our April - June Peer Connect calendar and stick it to your fridge so you can plan your activities and not miss out. Read articles in this edition of Talking Point with further details on what's coming up. 

We also have some really helpful updates in our community news section that you may not have been aware of, so be sure to scroll to the end and keep informed on the latest news from the sector. 

As always, enjoy the read!

Yours sincerely,

Charlotte Sangster, (she/her)
CEO, MDNSW

Info Share - Accessible Aotearoa (NZ)

This month, on Wednesday 26th April, for Peer Connect Info Share we’re discussing all things Accessible Aotearoa (NZ).

From road trips to cruises, managing airports, support workers and your insurance - this session will have all the tips you need to make your holiday in NZ one to remember (for all the good reasons).

FSHD Friends next month

We are holding an online peer connect session on Tuesday 9th May, for people with FSHD and their families, and parents of children with FSHD.

We’d love you to join in, meet new people, share experiences and information, and connect with others who face similar challenges.

Peer Connect Retreat coming soon!

We are holding another fun-filled Peer Connect Retreat and this time it's in Parramatta, Sydney! Parramatta Parkroyal is conveniently located in the heart of Parramatta.

Held from Friday 26 – Sunday 28 May 2023, this Retreat is your chance to get away and connect with other adults with neuromuscular conditions.

Unfortunately, this Peer Connect Retreat is full, but we are taking a waiting list and hope to hold a second retreat in October.

Mums' Retreat in the Mountains this June

The Mums' Retreat is fast approaching, being held from Friday 2 - Sunday 4 June 2023. Head to a stunning venue in Blackheath, Blue Mountains, for a perfect weekend to get away and connect with other mums, relax and recharge in great company. Places are still available!

A big red hot success at the Big Red Roll + Stroll 

On Sunday, 19 March, we held our annual Big Red Roll + Stroll event at Parramatta Park!

This was the first time we planned this event in person, and even with soaring temperatures, we were blown away by the turnout and support from the community. The park was filled with excitement, energy, and enthusiasm as participants enjoyed the activities and interacted with each other.

Thanks for coming out to walk, roll and stroll the 3km loop around the park despite of the hot weather while raising awareness and vital funds for people living with neuromuscular conditions. Together, we’ve raised so far $73,861 for our neuromuscular community!

Why not 'Ask a Scientist?'

Ever wanted to learn more about a particular neuromuscular condition, but don't know who to ask? We can get you the answers straight from the source, thanks to a fantastic program called 'Ask A Scientist'!

Scientists and researchers from the Kids Neuroscience Centre at the Sydney Children's Hospital Network are taking your questions now, so send them on through and we'll be sure to pass them on for you.

Accessible toilets around Sydney

If you are looking to enjoy a day out in beautiful Sydney, and need an accessible bathroom equipped with a hoist and adult-size change table, we’ve got a list for you to bookmark thanks to this blog from Have Wheelchair Will Travel

Check out these eight accessible Sydney toilets now available with a hoist and adult-sized change table.

Seeking your input in natural disaster project

Carers NSW and the Physical Disability Council of NSW have launched a new project to develop inclusive natural disaster preparedness and planning tools to reduce the impacts of floods and bushfires on carers, people with disability and older people.

If you have experienced the impact of natural disasters or live in a flood or bushfire prone area, they would like to hear from you.

Disability Royal Commission info session

The Disability Royal Commission invites you to come along to its face-to-face Sydney event to learn more about what they have heard about violence, abuse, neglect and exploitation of people with disability throughout the inquiry.

The information sessions are open to everyone and provide a safe and inclusive space for people to attend and ask questions.