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Welcome to your August 2026 issue of Talking Point!
If you've ever read a research article, heard about a new treatment or come across an NDIS update and thought, "What does that actually mean?" you're not alone.
This month is all about helping our community stay informed, ask questions and feel confident navigating the topics that matter most. With Neuromuscular Information and Research Day (NIRD) 2026 just around the corner, we're excited to share this year's program and the expert speakers joining us on 29 August.
You'll also find information about our new Innovator Grants Program, supporting the next generation of neuromuscular research. Plus, a new opportunity to submit your questions to leading clinicians and researchers through our upcoming Ask an Expert series.
Alongside these updates, you'll find stories from across the community, upcoming events and opportunities to connect with others who understand the realities of living with, caring for or supporting someone with a neuromuscular condition.
Thank you for being part of a community that continues to share, support and learn together. We hope you find something that inspires you to get involved this month.
Yours sincerely,
Jess Henry
CEO, MDNSW
Register for any event upcoming event via our online form →
Young Adults Connect
IN-PERSON: Saturday 22 Aug, 12 – 3pm, West HQ Rooty Hill
ONLINE: Saturday 12 September, 7 – 8pm
Young Adults Connect is a community for young adults living with neuromuscular conditions to build friendships, have fun and stay connected throughout the year.
From casual conversations to outings and activities chosen by young adults themselves, there’s always an opportunity to connect.
Friendly, relaxed and inclusive, Young Adults Connect is a place to feel understood, have fun and connect with people who just get it.
Mums' Chat
WHEN: Thursday 10 Sept, 7:30 – 9pm
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.
Powerchair Hockey Meet Up
WHEN: Saturday 12 September, 12 – 3pm
WHERE: Parklands Café, Blacktown Disability Sports Centre, Rooty Hill
Ready to experience the thrill of Powerchair Hockey? Come along and discover one of Australia's fastest-growing inclusive sports.
Learn from experienced players, get on the court yourself, watch a live game, or simply stay for lunch and a chat with fellow attendees.
Join us and try something new – you might just discover your new favourite sport!
Capital Region Meet Up
WHEN: Saturday 19 September, 12 – 3pm
WHERE: Snapper & Co. 1 Mariner Pl, Yarralumla ACT 2600
If you live in NSW’s Capital Region or Canberra, 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!
FSHD Friends
WHEN: Tuesday 22 September, 7 – 8pm
WHERE: Online
Join us for our FSHD Friends online meetup for people with Facioscapulohumeral Muscular Dystrophy (FSHD) and their families.
It’s a supportive space where members choose the topics, share lived experiences and pass on helpful information.
Whether it’s tips, questions or just a good story, everyone’s input helps us learn from each other and feel more connected.
MD Women's Network
WHEN: Friday 25 September, 11:30am – 2:30pm
WHERE: Royal Botanic Garden Sydney
Bringing women from the neuromuscular community together to connect, share experiences and shape the support that matters most to them.
The network offers space for conversation, leadership, mentorship and discussion of women’s health and lived experience.
Expect time to connect, share ideas and explore the topics that matter most to you – like navigating the NDIS, women’s health and relationships.
Overnight Breaks & Retreats
Young Adults Retreat October 2026
WHEN: Friday 16 – Monday 19 October
WHERE: PARKROYAL Parramatta, 30 Phillip St, Parramatta NSW 2150
If you’re aged between 18-30, our Young Adults Retreat is your gateway to building a supportive community for life!
Hang out with old mates and make new ones! Our Young Adults Retreats are for participants aged 18-30 living with a neuromuscular condition to get together, have fun and make memories with the freedom to plan your own program.
For more information or to register, click here →
IMPORTANT UPDATE: Summer Break 2027
Summer Break is an inclusive, supportive space where all children and teens aged 6 – 18 years living with a neuromuscular condition can make friends, build confidence and enjoy new experiences.
Due to renovation works at the Sydney Academy of Sport and Recreation in Narrabeen, Summer Break 2027 will now be held at Point Wolstoncroft Sport and Recreation Centre.
NEW DATES: Friday 22 – Tuesday 26 January 2027
Participants can still look forward to four nights of fun, friendship and activities tailored to a range of interests, personalities and abilities.
Only a few spots left. Register your interest today to join the waiting list.
Download the full 2026 program here→
Your Neuromuscular Information and Research Day (NIRD) 2026 Program
Living with a neuromuscular condition? Supporting a loved one? Working in health or research? NIRD is for you.
This year's program offers a mix of lived experience stories, interactive Q&A sessions, expert panels and research updates.
From AI and technology tips that support everyday independence to understanding clinical trial participation, NIRD offers something valuable for everyone.
WHEN: Saturday 29 Aug, 1 – 4:30pm
WHERE: Online
This program has been made possible thanks to the generous support of Hearts & Minds Investments.
Applications close 4 September.
New Grant Program to Support Neuromuscular Research
Investing in research is one of the ways we help create a better future for people living with neuromuscular conditions.
That’s why we are pleased to launch the Innovator Grants Program, offering up to $100,000 to support promising laboratory-based research into muscular dystrophy and other neuromuscular conditions.
The program aims to support innovative projects with the potential to improve understanding, treatment and outcomes for people living with neuromuscular conditions. We particularly encourage applications from early and mid-career researchers.
Become an MDNSW Member and Have Your Say
As part of the MDNSW community, you help shape the future of our organisation. Becoming an MDNSW member, or renewing your membership for the 2026–27 financial year, is one way to strengthen your connection and have your voice heard.
For just $22 per year, members can:
- Vote at the MDNSW Annual General Meeting
- Have a say in the future direction of MDNSW
- Show their support for a strong and connected neuromuscular community
Ask an Expert
Your Questions Answered
Ever read a research update, heard a medical term or discovered a new support option and wondered, "What does that actually mean?" Or spent hours Googling and still couldn’t find a clear answer?
Our new Ask an Expert series is your chance to have your questions answered by subject matter experts. Selected questions will be featured in our monthly Talking Point newsletter and across MDNSW social media channels.
Whether you're curious about a new therapy, trying to better understand a condition or have questions about everyday life, we'd love to hear from you.
There are no silly questions. If you've wondered about it, chances are others have too.
NDIS Reform update – What We Heard from the Minister for the NDIS
Last month, our CEO Jess Henry attended a meeting with Senator Jenny McAllister, Minister for the NDIS, to hear about the Government's reform priorities and upcoming changes to the Scheme.
While many details are still being worked through, several key themes emerged:
• The Government remains focused on ensuring the NDIS is sustainable for future generations.
• Some funding categories, including Social and Community Participation supports, are being reviewed as part of broader reforms.
• The introduction of the new NDIS Planning Framework has been delayed until April 2027 to allow additional time for consultation and preparation.
• Further changes to areas such as plan management are also being considered.
We know NDIS reform can create uncertainty. As the Federal Government progresses significant NDIS reforms through Parliament, MDNSW is continuing to monitor developments and advocate for the needs of people living with neuromuscular conditions.
The Gifts We're Grateful For
What are you grateful for this year?
Around the table at our Christmas in July lunch, this simple question inspired people to share what had mattered most throughout the year.
One by one, community members shared the ‘gift’ they were most grateful for this year. Health. Family. Friendships. The people who help us through the hard days and celebrated the good ones.
People swapped holiday plans, shared family updates, talked through looming NDIS changes and offered advice, encouragement and understanding along the way.
Boccia Brings Community Together in West Ryde
Our recent Boccia Meet Up at the new Bennelong Sports Centre was a fantastic morning of skill-building, connection and friendly competition. Participants came together to learn, practice and enjoy a spirited game of Red Roosters vs Blue Stitches.
A special thank you to Jamieson from the Sydney Blazers Boccia Club, who dedicates many of her Sundays to helping people learn and compete in this accessible and inclusive sport.
The friendly competition on the court and conversations over lunch made for a memorable morning, leaving participants with new skills and stronger connections to the community.
Meet Kate – Marketing and Engagement Coordinator
Meet Kate, our Marketing & Engagement Coordinator and the creative mind behind many of the resources, stories and designs you see from MDNSW.
"I love finding creative ways to make information easier to understand and more engaging. It's especially rewarding when a resource, story or event helps someone feel more informed, connected or supported."
From social media and tip sheets to website content and event photography, Kate helps bring MDNSW's programs and stories to life. She's also behind your monthly Talking Point newsletter (yes, this is a little weird to write in the third person!).
"Whether I'm designing a new resource or capturing an event, I love highlighting what makes our community so special."
If there’s a story to tell, Kate’s on it. If there’s something that could be designed better, explained more clearly or made easier to use, she’ll probably notice that too.
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.
A Decade of Change in SMA Care
Did you know it's been almost a decade since the first disease-modifying therapies transformed the outlook for people living with Spinal Muscular Atrophy (SMA)?
In the latest episode of The Lancet Voice, MDNSW Board Medical Director and paediatric neurologist, Professor Michelle Farrar, discusses how SMA care has evolved over the past 10 years. She explores how advances in diagnosis, newborn screening and treatment are improving outcomes for children and families.
The episode also looks at what recent research is teaching us about life with SMA today, how these advances are shaping everyday experiences, and the key priorities for SMA care and research in the years ahead.
Find out more and listen on your favourite podcast platform →
MissingSchool – Live & Learn Podcast
Live & Learn is a podcast from MissingSchool, an Australian charity that helps children who miss school due to disability or chronic health conditions stay connected to their education and peers.
In episode 44, community member Alison shares her family's journey of raising her son Jack, who lives with Duchenne muscular dystrophy (DMD), and the lessons they've learned along the way.
This thoughtful conversation offers practical ideas, support and real-life stories to help young people thrive at school and beyond.
Help Shape a New Event for the Becker Community
The Save Our Sons Duchenne Foundation is developing a new Becker Education & Engagement Day (BEED) and is seeking input from people with lived experience to help shape the program.
If you're living with Becker muscular dystrophy, supporting a family member, or caring for someone with Becker, they would love to hear your ideas. What topics would you like covered? Are there speakers you'd like to hear from? What would make the day valuable and meaningful for you?
Your feedback will help ensure the event reflects the needs, interests and experiences of the Becker community.
Thanks to our Official Partners
