Welcome to our August issue of Talking Point! 

Who’s been watching the 2024 Olympic Games? It’s truly inspiring to witness the comradery and community spirit during the Olympics. I’m also counting down the days for the start of the Paralympics and will be cheering on our Aussie teams, including some of our very own community members and boccia champions Jamieson Leeson and Daniel Michel. Good luck team and go Aussies!!! 

In other news, we’ll be hosting our annual Neuromuscular Information & Research Day on 24 August online. You won’t want to miss this - have the opportunity to listen to some of Australia’s biggest experts in the neuromuscular field and register now. It’s free to attend! 

On 16-17 September, Save our Sons Duchenne Foundation will be hosting its National Duchenne Conference at Waterview Bicentennial Park. The two-day event will feature a range of global and national speakers to empower and inspire you. The MDNSW will also have a booth to answer any questions you may have. Come visit us and say hello! Read on below for further details. 

Other events on the horizon include our Spring Roll & Pot Luck Picnic, Young Adults Retreat and Women’s Retreat! Places are limited so don’t miss your spot and register below. 

I look forward to seeing you and your families at one of our many events soon! 

Yours sincerely,

Charlotte Sangster

Charlotte Sangster, (she/her)
CEO, MDNSW

You’re invited!  

Join us on Saturday 24 August at 1pm for the Neuromuscular Information and Research Day (NIRD).  Hear the latest research from medical professionals, along with lived experience stories from your neuromuscular community at this FREE online event! 

Sessions include: 

• Research into the Latest Treatments for NMCs  

• Navigating the NDIS Q&A panel with MDNSW Experts  

• Sleep Tight – Sleep Issues and Solutions for Adults with NMCs  

• Education Transitions – Transition to Primary School and High School  

• What Can MDNSW Do For You? 

Adventure Camp Recap!

Last month, our campers soared to new heights (literally!) at our Adventure Camp at The Tops Conference Centre. Over five days, the campers experienced a range of activities including abseiling, archery and even a high ropes course!  A highlight of the camp was definitely the jungle safari themed disco. Our campers and the camp carers dressed in their finest jungle safari attire and let loose on the dance floor.  

Interested in getting involved in our next Adventure Camp? The dates for our 2025 camp have been locked in: Sunday 13 – Thursday 17 April 2025 at The Tops Conference Centre. Register your interest early by contacting us at info@mdnsw.org.au or call (02) 9888 5711.   

InfoShare Goes Social - Christmas in July

In July, 10 participants met for a long lunch Christmas in July style at the Lusso Restaurant at Blacktown Workers. There were laughs and dress-ups, a delicious meal and lots of time to socialise. Our next social event will be our Spring Roll and Pot Luck Picnic on Saturday 28 September from 12 – 3pm, join us for a roll along the Parramatta River in Rydalmere, picnic lunch and cupcakes to celebrate someone turning 50!  

SMArties Peer Catch Up

Last week our SMArties peer group met and heard from guest speaker Dr Christina Liang about the latest research in treatments for SMA. The group shared valuable lived experiences and a supportive space to chat about life with SMA. Our next condition specific group will be LGMD Connect on Tuesday 3 Sept from 7-8.30pm so please register if you would like to attend.

Sydney Disability Expo 2024

Earlier this month at the Sydney Disability Expo 2024, our board member Tait Jenkins took the stage to share his lived experience with Spinal Muscular Atrophy (SMA). Tait spoke about growing up and navigating life with muscular dystrophy, and the ways in which MDNSW has been able to support him through programs and events.  

Women's Retreat - November

Register now for our Women's Retreat on 1 - 3 November at Novotel Canberra. This retreat is your chance to relax, rejuvenate and connect with other women who share similar journeys.  Make new friends and enjoy time with wise women. 

Spots are almost full so places are strictly limited! Register now by contacting our team at info@mdnsw.org.au.     

Adventure Camp is Back for 2025!

You heard it here first! The dates for our 2025 Adventure Camp have been confirmed! Adventure Camp will be at The Tops Conference Centre, from Sunday 13 – Thursday 17 April 2025.

Register your interest early by contacting us at info@mdnsw.org.au or call (02) 9888 5711. 

Spring Roll & Pot Luck Picnic

Join us for our Spring Roll & Pot Luck Picnic! With scenic views of the Parramatta River, enjoy a day of festivities, food and FUN!

WHEN:  Saturday 28 September from 12 – 3pm,
WHERE: Eric Primrose Reserve Rydalmere

Contact our friendly team to RSVP at info@mdnsw.org.au or on 9888 5711.

Summer Camp - Register Now!

Get excited - Summer Camp is back! Our 2025 Summer Camp will be on Monday 13 January – Friday 17 January at Sydney Academy of Sport and Recreation in Narrabeen, NSW.  Secure your spot today! Contact our team on  info@mdnsw.org.au
or call (02) 9888 5711 now.     

YA Retreat - October

Lock in your spot now for our October Young Adults Retreat! Join us at The Lodge in Blacktown from Friday 11 October to Monday 14 October. Register now by contacting our team at info@mdnsw.org.au.    

Come and Try Day - Australian Powerchair Hockey Association NSW

The Australian Powerchair Hockey Association has announced their upcoming ‘come and try’ day in Sydney.

Whether you're wanting to try something new or you're looking to make new friends - EVERYONE is welcome, regardless of your experience level! If you've ever thought about trying powerchair hockey, this could be your chance! 

WHEN: Saturday 14 September, 12:30pm-2:30pm 
WHERE: Concord Oval Recreation Centre

Focus on Ability Films - Free Tickets!

Thanks to NOVA Employment, Focus on Ability are hosting free screenings for their 2024 Focus on Ability Films. The screening is being held in Sydney on Monday 12 September.  Spots are limited so get in quick!

Save Our Sons Duchenne Foundation National Duchenne Conference

The Save Our Sons Duchenne Foundation National Duchenne Conference is coming to Waterview Bicentennial Park on Monday, September 16 and Tuesday, September 17. The conference will be an inspiring event featuring a wide array of speakers who will spark your curiosity, engage your mind, and empower you. Don’t miss the chance to visit our MDNSW booth and say hello! 

PDCN Workshops 

The Physical Disability Council of NSW are running a series of online workshops throughout September. These workshops are free for people with disability and their parents or unpaid informal supports.

Workshops will cover topics such as the NDIS, employability and expanding your potential.