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Welcome to your July 2026 issue of Talking Point!
I’d like to begin with a heartfelt thank you to everyone who supported our EOFY Tax Appeal. Your generosity will help more young adults experience the connection, confidence and independence that grow through programs like Young Adults’ Retreat.
This month, we're excited to share even more opportunities to build friendships, learn from others and stay involved through our growing Peer Connect program.
Packed with new groups, local meet-ups and familiar favourites, it’s your guide to staying connected and making the most of what our community has to offer.
And registrations are now open for Neuromuscular Information and Research Day (NIRD) on 29 August. It’s a fantastic opportunity to hear from experts, explore the latest research and learn from lived experience from across the neuromuscular community.
As always, I encourage you to explore what’s here, stay connected and take part in the opportunities that matter most to you.
Yours sincerely,
Jess Henry
CEO, MDNSW
Peer Connect Calendar July – December out now!
Young Adults Connect
Looking for a new way to stay connected with other young adults who understand what life is like with a neuromuscular condition? Young Adults Connect is for you!
From casual group chats to outings and activities chosen by young adults themselves, there's an opportunity for every personality to connect.
This new group meets monthly, online or in person. Our first online catch up is coming soon:
🗓️ Saturday 18 July, 7–8pm
Christmas in July
WHEN: Saturday 25 July, 12 – 3 pm
WHERE: Club Parramatta
Join your peers and celebrate the chilly season with good food and great company at a Christmas in July social lunch.
Expect laughs, games and prizes for the best festive fashion – ugly sweaters encouraged!
Bring along your family and friends.
RSVP by Wednesday 22 July here →
SMArties
WHEN: Tuesday 4 Aug, 7–8pm
WHERE: Online
A fun online catch up for people living with Spinal Muscular Atrophy (SMA).
It’s your chance to connect with like-minded peers, share experiences, swap tips and stay in the know.
Smart, savvy and supportive – this group is about learning together.
Mums' Chat
WHEN: Monthly
WHERE: Online
A monthly online catch‑up for mums to take a breath and connect with others who understand.
Motherhood can ask a lot, and when you’re raising a child with a neuromuscular condition, it can feel even heavier.
This is a relaxed, supportive space to share stories, swap tips, listen or simply be; however you need to show up.
New faces are always welcome.
Boccia Meet Up
WHEN: Sunday 16 Aug, 10am – 1pm
WHERE: West Ryde Sports Centre
Looking to try something new, build your skills and connect with others? Give Boccia a go with the Sydney Blazers!
• Take part in a hands-on skills session
• Watch experienced players in action
• Learn about this inclusive and strategic sport
• Stay for lunch and a chat with fellow community members
Whether you're new to Boccia or a seasoned player, come along, have a go and discover why so many people love the game.
Central Coast Meet Up
WHEN: Saturday 5 Sep, 12 – 3pm
WHERE: Diggers The Entrance
If you live on NSW's Central Coast, Peer Connect is coming for you!
Spend the afternoon with peers in your community who understand what it’s like to live with a neuromuscular condition.
Have a chat, share local tips and build meaningful connections in your own community. Lunch is on us!
Overnight Breaks & Retreats
Introducing Summer Break
From January 2027, we are offering Summer Break, a four‑night program for all children aged 6–18 living with neuromuscular conditions.
It's a place to make friends, build confidence and enjoy new experiences in a supportive, inclusive environment.
Your child will experience:
• New adventures and activities in a fun, supported way
• Making friends who understand them
• Feeling included, supported and proud of themselves... and more!
Summer Break is designed to align with updated NDIS Short Term Accommodation (STA) guidelines, making it easier for families to request and access funding. If you’re unsure about how STA funding works for you and your family, download our tip sheet →
Register Now: Neuromuscular Information and Research Day (NIRD)
WHEN: Saturday 29 Aug, 1 – 4:30pm
WHERE: Online
Have questions about neuromuscular conditions?
Whether you’re living with a neuromuscular condition, supporting someone who is or simply want to stay informed, NIRD is for you.
Topics include:
• Research and treatment updates
• Children, families and growing up with a neuromuscular condition
• Health and wellbeing across adulthood... and more!
This free, accessible online seminar is your chance to learn from the best, ask questions and discover resources and supports tailored to your needs.
New Diagnosis Companion
Find support and guidance from those who know
Caring for yourself and your loved ones after your child has received a neuromuscular diagnosis can be difficult. That’s why Chapter 2: You, Your Child & Your Family is all about finding connection and support, looking after your wellbeing and getting organised.
Inside, you’ll find:
• Tips and resources for parents and carers
• Guidance on talking to your child about their diagnosis
• Ways to support siblings and other family members… and more
Take a moment to explore Chapter 2 and see what feels most helpful for you.
Taking Your Experiences to Decision Makers
Over recent months, we've been listening closely to community feedback about NDIS changes and the impact they're having on everyday life. In response, we’ve made submissions to multiple Federal and State MPs outlining these experiences
While many reforms have been presented as future changes, we’re already seeing worrying trends. This includes reduced plan budgets, the withdrawal of previously approved supports and increased barriers to accessing essential services.
We are concerned that some planning and funding decisions are not adequately recognising the progressive and degenerative nature of neuromuscular conditions.
We have sought support to meet with the Hon Mark Butler MP and Senator Jenny McAllister to discuss these issues directly.
Our goal is simple: to ensure the voices of people living with neuromuscular conditions are heard and help shape the future of the NDIS.
High Tea, History and Great Company at the MD Women’s Network
The MD Women's Network recently braved a cold and drizzly Sydney day for its very first outing – and what a day it was!
The adventure began with a delicious High Tea at the beautiful QVB Tea Rooms. The group then travelled by accessible Light Rail to the Sydney Opera House for a Mobility Tour, where they learned about the landmark’s unique history and architecture.
By the end of the day, everyone was already exchanging ideas for the next outing!
Join us at the next MD Women's Network event at the Royal Botanic Gardens →
Creativity, Connection and Candlelight at Maker’s Day
Our Springtime in Winter Maker's Day brought together all the ingredients for a cosy afternoon: crafts, a picnic lunch, tea and coffee, and catchups with the community.
Participants enjoyed card-making and tried their hand at pipe-cleaner flower bouquets, with some wonderfully creative results!
The highlight was a candle-making workshop run by Dominique and Antonio from Colourful Wine, where everyone experimented with scents and colours before pouring their own personalised soy candle to take home.
We loved seeing so much creativity and community spirit in one room, and we're already looking forward to the next Maker's Day!
Meet Allyce – Service Delivery Manager
We’re excited to welcome Allyce back to MDNSW!
An Occupational Therapist by background, Allyce has more than 10 years’ experience in the disability sector. “I love supporting others to reach their goals,” she says.
Day-to-day, Allyce helps bring our programs to life, making sure every event, retreat and service is safe, accessible and enjoyable for the people who attend.
“Seeing others connect makes my day, whether it’s the team collaborating or community members connecting at an event,” she says. And her secret to a great workday? “It’s got to be chocolate!”
We’d also like to say a huge thank you to Andrew for leading the Service Delivery team during Allyce’s maternity leave. From fresh ideas and valuable lived experience to bringing extra warmth and cheer to community events, you've made a wonderful contribution.
Free PDCN Workshops August
In August, the Physical Disability Council of NSW (PDCN) is offering free online and in-person workshops.
Topics include:
• Changes to NDIS legislation and how it affects you
• Better understanding what you can use your NDIS funding for
• Nurturing yourself and enhancing your wellbeing
• Practical self-care tools for parents of children living with disability
Free NDIS Webinar Series
If you're an NDIS participant, family member, carer or health professional and would like a better understanding of the NDIS, these free webinars could be for you.
They cover a range of practical topics including available supports, funding pathways and how to navigate key NDIS processes with greater confidence.
There are two remaining July webinars:
- Community Connections
- Pathways to Post School Life
Paid opportunity to give your feedback on NDIS Planning
From April 2027, the NDIS will introduce changes to planning for participants, with the aim of making the process simpler, more consistent and flexible.
Before these changes are rolled out, the NDIS is inviting people with disability to take part in two paid testing opportunities, to trial the proposed process, give feedback and identify ways to improve.
While the testing won’t change NDIS legislation or funding rules, it will help inform how the new planning approach is implemented in practice.
This is a voluntary, paid opportunity for NDIS participants over 18 years. It will not affect your current or future funding or eligibility.
Podcast recommendation: Duchenne Connections
Looking for stories from people who truly understand the Duchenne journey?
Duchenne Connections is a podcast hosted by two mums of children living with Duchenne Muscular Dystrophy, sharing honest conversations and lived experience.
It explores everything from diagnosis and family life to caring, advocacy and navigating the challenges and milestones that come along the way.
It’s a great listen for families looking for support, insights and connection.
Find out more and listen on your favourite podcast platform →
Thanks to our Official Partners
