Welcome to your April issue of Talking Point! 

I’m really pleased to be writing to you for the first time as CEO of MDNSW. It’s a privilege to be part of such a strong and vibrant community – one that’s built on connection, resilience and genuine care for one another.

I sincerely thank Charlotte Sangster for her enormous contributions to MDNSW over the past eight years and wish her every success for the future. I know we'll see her around. If you’d like to read more about the recent leadership transition, you can find the update here.

This edition of Talking Point is a great reflection of the community spirit that defines MDNSW – from the friendships formed at our Peer Connect Retreat in Canberra, to the laughter and conversation at our MD Dads Night. And there’s so much to look forward to, like strolling through Sydney Zoo at the Big Red Roll & Stroll, getting creative at Maker’s Day and exploring inclusive sport at our upcoming InfoShare.

There’s also still time to share your thoughts in our 2025 Clients, Families & Friends Survey – a simple way to let us know what matters most to you and how we can keep improving.

Over my last two years with MDNSW I've met so many of you through camps and events. I’m excited to get to know more of you, to listen and to work together to build on the great work that’s already been done.

Thanks for being part of this community. I hope to see you at something soon.

Yours sincerely, 
Jess Henry

Jess Henry
CEO, MDNSW

Peer Connect Retreat Heads to Canberra

We’re still riding the high from an unforgettable Peer Connect Retreat in Canberra earlier this month. The weather was perfect, the company even better, and the Easter-themed welcome dinner set the tone for a weekend full of laughter, conversations, games and creativity.

We also explored the National Gallery and enjoyed a scenic roll around Lake Burley Griffin. But the best part? The sense of connection.

“For me, Peer Connect is a family… this is my family, and I enjoyed every minute of it. I enjoy talking to people and seeing we’re not alone in our struggles and everything is doable, you just need to be resilient.”

“Normally when I’m with a group of people, I’m always trying to hide my problems – my difficulties. I don’t have to here because we’ve all got them and we all share them. It’s what makes us who we are.”

Thank you to everyone who made it so special. We already can’t wait for the next one.

MD Dads Night Hits the Mark

Our latest MD Dads event brought together 10 dads of kids living with neuromuscular conditions for a night of connection, conversation and some friendly competition.

They kicked things off with axe throwing. With only two people throwing at a time, the rest of the group had the chance to dive into valuable conversations about NDIS, therapies and school life for their kids. These nights are helping to build stronger bonds and it’s clear the dads are becoming more open and connected with each event. They’re already asking – when’s the next one?

Family Easter Lunch

Don’t miss our Easter Lunch on Sunday 27 April at Ardill House – MDNSW's new office! There will be an Easter Egg hunt for the kids, a catered lunch and hot cross buns for the adults. Meet others, get handy information and connect with your neuromuscular community. Free but registration required.

InfoShare: Accessible sports

Come along to a fun and informative session on accessible and inclusive sports. Hear from guest speakers including Jamieson Leeson (BC3 Boccia Paralympian), Kieran Watts (Vice-President – Australian Powerchair Hockey Association NSW) and Chris Suffield (Sydney FC Powerchair Team).

Myotonic MeetUp

If you live with Myotonic MD or are a family member, you’re invited to come along to our Peer Connect Myotonic MeetUp! It’s a great way to connect with others, make friends and learn new things! Join us Tuesday 13 May at Ardill House, from 11am to meet with others in our Myotonic community. Lunch included.

Sydney Disability Expo

Join our Peer Connect team as we take a trip to the Sydney Disability Expo. This event brings together a range of product and service providers to help people live their best life. It features informative and interactive presentations delivered by industry experts, advocates and entertainment.

Maker's Day

Join us for a day of creativity with arts and crafts at our next Maker’s Day. This time, we’ll be hosting our very own ‘paint n sip’! Connect with your community. Relax and let the creative juices flow. Lunch and materials included. The event is free and accessible. Just make sure you RSVP by 1 June!

Young Adult's Retreat

If you’re anything like us, you’re still buzzing from Young Adults Retreat last month. So why not start thinking about joining us at the next one in November? It’ll be held at Atura Blacktown. Designed for people aged 18-30, this is a chance to shape your own program, connect with others and have fun.

Summer Camp 2026

Planning for Summer Camp 2026 is already underway! It will be at Narrabeen Sports and Recreation Centre from 12-16 January 2026. Summer Camp is for kids aged 6-18 living with a neuromuscular condition and use a powerchair for mobility. It's a safe, inclusive and fun environment for kids to build confidence and make new friends.

2025 Clients, Family & Friends Survey

There’s still time to complete our 2025 Clients, Families & Friends Survey! Your feedback helps us improve our programs and make sure we’re meeting the needs of our community. It only takes about 10 minutes, and you’ll go in the draw to win a $250 or $500 gift card.

Tell us what you love, what you’d like more of, and how we can do better.

Join us at the Big Red Roll & Stroll

We’re sure you’ve been hearing all about it, but Big Red Roll & Stroll is coming to Sydney Zoo (Eastern Creek) on May 10! This is your chance to walk, roll or stroll through the zoo with friends and family, then celebrate your amazing fundraising efforts at the annual GLOW event. It’s always a feel-good day, full of connection and fun.

There’s still time to register and get involved.

Physical Disability Council of NSW workshops

The Physical Disability Council of NSW (PDCN) are running a series of online workshops throughout April.

These workshops are free for people with disability and their parents or unpaid informal supports. Workshops will cover topics such as the NDIS and employability.

Lived Experience Advisory Panel

PDCN is looking for members to join their Lived Experience Advisory Panel (LEAP). 

The LEAP is a group of people who use their experience of physical disability to advocate for meaningful change on behalf of the physical disability community. This is a paid position.

Boccia Come'n'try

Haven’t tried Boccia yet? The Boccia NSW State Titles will be at the Penrith Valley Regional Sports Centre from May 11-14. Come down to watch athletes play some fantastic games of Boccia and while you are there, you too can give it a go!

Free Dance Workshops

Join DanceSport Australia on 21-22 June for free workshops providing a safe and inclusive space for people with disability to explore dance. Connect with experienced coaches, enjoy some dancing and network with others.