Welcome to your February issue of Talking Point! 

Welcome to 2025! We're so excited to start this new year with you all. Our calendar is already jam packed with events. Keep reading to find out more. 

Earlier this month, I had the opportunity to sit down with Minister Kate Washington and members of the NSW Disability Advocacy Network. We discussed the future of Foundational Supports – the development of specific services available outside the National Disability Insurance Scheme (NDIS) to support people with disability, and those around them. While there’s still no clear timeframe for when these supports will be available, we do know that the initial priority cohort will be children aged 0-9.

At MDNSW, we know first-hand how critical it is to have the right supports in place, not just for individuals, but for families navigating the complexities of care and daily life. Right now, there are significant gaps in the system. We made it clear in our meeting that people with neuromuscular conditions must be included in the development of these Foundational Supports.

The good news?
The Minister and her team are listening.
The challenge?
Making sure this translates into real action.

We won’t stop pushing for an inclusive and equitable system. MDNSW is working closely with the NSW Government, alongside other advocacy groups, to ensure that the voices of people with neuromuscular conditions are heard – not just in words, but in policy and funding decisions.

We’ll keep you updated as we learn more. In the meantime, if you have a story or experience you’d like to share to strengthen our advocacy efforts, we’d love to hear from you.

Together, we can make change happen.

Yours sincerely, 
Charlotte Sangster

Charlotte Sangster, (she/her)
CEO, MDNSW

Summer Camp 2025

Our recent summer camp was a resounding success, with 4 campers joining us for their first time. Ryan and Gideon also celebrated their last camp as they graduate to our young adults program.

Some of the camp highlights included the reptile show, trying out accessible sports (boccia and powerchair football), laser tag, and even DJ-ing. This year, two of our young community leaders Scott and Jaxon dropped in to run some activities and lead a peer connect session with some of the older campers. 

A huge thank you also goes to the wonderful camp team and the fabulous volunteers who make this program possible. We hope that all our campers had a fantastic time. We already can't wait for next year!

Return and Earn 

It's never been easier to support MDNSW and help the environment at the same time. You can choose to return your eligible containers through Return and Earn and donate the 10 cent refund to us. 

All donations received will fund the services that we provide to our neuromuscular community. Billions of drink containers have been returned for recycling through the Return and Earn network of over 630 return points in NSW, since the scheme launched in December 2017. Every eligible bottle has the potential to help us provide tailored information, support programs and connection to our community.

Community Heroes Update: Cole Classic

Thank you to our Community Heroes (and camp carers!) Paityn, Oscar, and Blake for raising over $1100 as part of their Cole Classic challenge! The Pink Caps and Swimming Laps team swam 2km from Shelly Beach to Manly Beach. Thank you for helping us raise awareness about neuromuscular conditions, and for supporting MDNSW!

International Women's Day - Save the Date!

Join us on Friday 7 March, 11am – 2pm at the Conservatory in Cabarita Park. Connect and share stories as we celebrate the diversity, resilience, and strength of women in our neuromuscular community.

Games, prizes, luncheon, mocktails and creative floral activity will all be provided.

The venue is fully accessible. This is a free event for people living with NMCs, their families, carers, and friends. RSVP by 28 February. 

Maker's Day

Get creative with a variety of crafting activities at our annual Maker's Day. Connect with likeminded community members. We will be making terrariums, jewellery, cards, and vision boards. There will also be home-made goodies for sale. 

Enjoy lunch, refreshments and nibbles! The event is free and accessible, with a changing places bathroom available. 

WHEN:  21 February, 11am – 3pm 
WHERE:  PHIVE in Parramatta 

RSVP by 28 February.

Peer Connect Retreat

This year the Peer Connect Retreat will be held in Canberra on Friday 2 April to Sunday 6 April. Our venue is the Novotel Hotel, which is situated in the heart of the CBD, close to restaurants, shopping and many great attractions. You can jump on the light rail, visit a museum or gallery, or take a roll around Lake Burley-Griffin. There will be both group and independent free time to explore and experience the Nations Capital vibes, and a chance to relax in the hotel bar, restaurant, or pool. Connect with your peers, share your experiences, and make memories at our Peer Connect Retreat.

Info Share - National Muscle Disease Bio-Databank

Join us for on Tuesday 18 February 2025 at 11am for a special edition of InfoShare, with guest speakers from the National Muscle Disease Bio-Databank (NMDB), Emily Galea (Nurse Project Coordinator) and Dr Pete Howeling (Principal Investigator of the NMDB). They will be providing background information about Bio-Databank and the team, as well as progress and future direction of patient advocacy.

Adventure Camp 2025

Clear your calendars for April 2025 – Adventure Camp is locked in! Join us at Stanwell Tops from Sunday 13 April – Thursday 17 April for the 2025 instalment of Adventure Camp. This camp is designed for children aged between 6 and 18 who are independently mobile.

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

Australasian Neuromuscular Network (ANN): Patient, Family and Advisory Group Day

This year, the ANN 2025 meeting will be held in Queensland at the Sunshine Coast Convention Centre. The day will gather like-minded clinicians, patients, and families, who all share the goal of improving treatment and quality of life of patients with neuromuscular disorders across Australasia. 

WHEN: Friday 28th March 
WHERE: Sunshine Coast Convention Centre

Focus on Ability Short Film Festival 

Focus on Ability are challenging you to create a powerful, under-5-minute film that showcases the talent, strength, and accomplishments of people with disabilities. Beyond the incredible prizes – over $100,000 in rewards – you will gain recognition for championing a more inclusive world. You can join a movement that’s making a lasting impact!

Entries close 1st July! Click the image below to find out more!

Power Outage Plan 

The Life Support Power Outage Plan is a national public awareness campaign that’s been developed in close consultation with life support customers and care agencies. 

The campaign call to action is for all people who use life support in the home to feel empowered that they know what to do in case of an unplanned power outage. The campaign uses a simple, memorable three-word cue to get the message across. We’re asking people to CHECK. PLAN. DO. Help us spread the message to your communities to ensure life support customers are prepared for unplanned power outages!

Australasian Neuromuscular Network (ANN): Patient, Family and Advisory Group Day

In February, FSHD Global Research Foundation are launching 'Cure FSHD', a free patient-led registry to empower the FSHD Community. This tool will build trial readiness, connect individuals with potential clinical trial opportunities. It will help ensure our FSHD community are informed, engaged, and ready to participate in clinical research and benefit from future approved therapies.