Welcome from the CEO

Welcome to your March edition of Talking Point! 

We can't wait to hold our annual Big Red Roll + Stroll event this Sunday and in-person for the first time! It's not too late to register (virtual option too) and join us in celebrating our wonderful neuromuscular community. 

In Peer Connect, we have A LOT coming up both online and in person, including an Info Share session on the hot topic of NDIS, our first SMArties lunch for the year, and registration now open for our very popular Peer Connect Retreat.

Tuesday, 7th March, saw us gather for a splendid high tea lunch with a group of wonderful women from our neuromuscular community for International Women's Day.

I was so moved by strength and solidarity shown amongst the women there and the stories of lived experience shared were appreciated by all. Read more and see some photos in the article below!

Last but not least, I'd like to personally welcome our new President of the MDNSW Board, Robert Fraser, to our community and thank outgoing President Anthony Ball for his outstanding service. 

I hope you enjoy the read and all that is to come this year.

Yours sincerely,

Charlotte Sangster, (she/her)
CEO, MDNSW

Info Share - Take Charge of your NDIS

This month, on Thursday, 23rd March from 7:30 – 9:00pm we’re discussing how to take charge of your NDIS. It’s a great opportunity to connect with others who also deal with the NDIS, and who self-manage or have a plan manager. Bring your questions and challenges you are having. Contribute your experiences, ideas and wisdom to your fellow peers.

These groups share some excellent tips and tricks about what NDIS funding can be spent on and how to get what you really need from your NDIS plan.

SMArties Lunch

SMArties is a peer connect group for adults living with SMA, who come together about three times a year to chat about the things that matter to them.

The next catch up will be a fun lunch held on Saturday, 1st April (we're not fooling! 😜) from 12noon -3pm at the newly renovated Lloyds Bistro, Dooleys Club, Lidcombe. 

Peer Connect Retreat

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. Not far from the Eat Street, Westfield shopping centre and the Parramatta River. Historic Parramatta Park is a lovely place to explore, full of history and natural beauty.

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

Get ready to run, roll + stroll this weekend!

Big Red Roll and Stroll is this weekend and it's not too late to sign up for this amazing community event!

Join us this Sunday at the Bowling Green Park (Parramatta Park) for a 3km awareness raising walk around the park, celebrating our amazing neuromuscular community. 

Following the walk there'll be plenty of activities, entertainment, info stalls and a free BBQ lunch in our entertainment village!

DON'T FORGET TODAY IS DOLLAR MATCH DAY - DOUBLE ALL DONATIONS!

Mums' Retreat moved to June

The Mums' Retreat has a new date of Friday 2 - Sunday 4 June 2023. Held at the same venue in Blackheath, in the Blue Mountains, this Retreat is the perfect weekend for you to get away and connect with other mums; to recharge with some time-out in great company!

Celebrating the women in our MD community

On Tuesday, 7th March, we hosted our International Women’s Day High Tea at Waterview, Bicentennial Park.

35 wonderful women came together in purple to celebrate the strength and resilience of women in our neuromuscular community. 

Have your say on the real estate industry

Have you ever tried to buy or rent a home through Real Estate agencies or used Real Estate websites? The Physical Disability Council of NSW want to hear from you!

PDCN is looking to understand the experience of people with disabilities and real estate. By providing your experience, they aim to improve the way the Real Estate industry supports people with disability to find housing that best suits their needs.

MDNSW appoints a new President 

We are excited to welcome Robert Fraser to his newly appointed leadership role as the President of MDNSW. Robert has been a supporter of MDNSW for many years and is eager to utilise his extensive professional experience and passion for giving back to advance the interests of the neuromuscular community.

ATAGI 2023 booster advice

The Australian Technical Advisory Group on Immunisation (ATAGI) has released new recommendations regarding COVID-19 boosters in 2023. 

Further to these recommendations, MDNSW has also updated its policy to reflect Government advice, meaning we no longer require Covid-19 vaccination evidence to attend an in-person MDNSW event.