Welcome to your June issue of Talking Point!
As we move into the second half of the year, I’m proud to reflect on the incredible momentum we’ve built together. From raising a record-breaking $92,600 at the Big Red Roll & Stroll, to providing life-changing equipment for young people like Shiva at the GLOW Charity Night, it’s wonderful to see our community continue to show up for each other.
Our recent Thank You Day for camp carers gave us valuable insights into the experiences we provide for our young neuromuscular community. Here’s a photo to give you a glimpse – more details to follow.
Behind the scenes, we’re pushing forward on advocacy by supporting a national action plan for people living with neuromuscular and neurological conditions. We also welcomed Member for Drummoyne, Ms Stephanie Di Pasqua MP to our office to talk about what matters most to our community. We’ve definitely got some strength behind our shared voice!
With a fresh Peer Connect calendar now live and our tax time appeal well underway, there are plenty of ways to get involved and make a difference. Whether you’re donating, learning, sharing or showing up, you’re helping us build a more inclusive future for our community.
Thanks for being a part of this journey.
Yours sincerely,
Jess Henry
Jess Henry
CEO, MDNSW
Big Red Roll & Stroll Raises $92,600!
You’ve probably heard the buzz and seen the highlights, and now we’re thrilled to share the total – our biggest Big Red Roll & Stroll yet raised an incredible $92,600!
Over 180 participants rolled, strolled and cheered their way through Sydney Zoo to help fund our Young Adults Retreat program. Thanks to your support, more young people will get the chance to connect, recharge and experience the freedom of a weekend away. What a way to make an impact!
Don’t forget to catch all the official event highlights!
Thank You, Camp Carers!
We recently celebrated some of our returning volunteer camp carers with a special Thank You day. Huge thanks to Jason from the NSW Powerchair Football Association for coaching us through a morning Powerchair Football session – though we’ve got a long way to go to match their skills!
After building up an appetite, we shared a meal and some great conversations at The Ettamogah Hotel, who kindly hosted us in their beautiful venue. It was the perfect chance to connect, reflect and share stories with fellow carers.
Interested in becoming a camp carer? We’d love to hear from you!
Charity in Action: Family Receives Support at GLOW Charity Night, Supported by William Buck
We were proud to take part in a special event last month that highlighted the power of community and generosity. At the William Buck Charity Night held at Sydney Zoo during the GLOW festival, nine-year-old Shiva, who lives with Duchenne muscular dystrophy, was presented with a brand new wheelchair.
This incredible gesture was made possible thanks to the generosity of Sunrise Medical who donated the wheelchair, and the support of William Buck and Sydney Zoo.
For Shiva and his family, the new wheelchair will help make day-to-day life a little easier – and serves as a reminder that they are not alone on this journey.
Huge thanks to Sunrise Medical, William Buck and Sydney Zoo for their generosity and their continued support of families living with neuromuscular conditions.
Save The Date: Neuromuscular Information and Research Day
WHEN: Sat 23 Aug, 1–4:30pm
WHERE: Online
Have questions about neuromuscular conditions? Whether you’re living with one, supporting someone who is, or working in the field, NIRD is for you. The event brings people together to discuss current research and hot topics, treatments and experiences.
Expect presentations from health specialists and discussions led by those with lived experience on topics like smart home tech, fatigue management and advocating for your needs.
New Diagnosis Companion
Receiving a neuromuscular diagnosis can be overwhelming for children and their families. That’s why we’re developing the New Diagnosis Companion, a program designed to offer personalised, early support for families in NSW when it’s needed most.
This program will help families feel informed and empowered from the start, reducing isolation and ensuring they’re linked to the right supports at the right time.
We’re inviting parents and carers to help shape the program by joining a consultation group.
Help Kids like Tarek and Riley Experience an MDNSW Camp
When Vanessa’s sons Riley and Tarek were diagnosed with Duchenne muscular dystrophy, she feared they’d miss out on the joys of childhood. But through MDNSW’s camps her boys have swapped fear for freedom – soaring on giant swings, making friends and even pulling off a few cheeky pranks! These experiences build confidence, independence and joy for children who often miss out on the chance to play, connect and just be kids.
But there are more kids like Riley and Tarek still left on the sidelines. With EOFY approaching, your support can help us deliver the equipment, activities and care they need to grow and thrive.
Will you donate today to unlock a child’s potential, so no one is left on the sidelines?
Local MP Shows Support for Neuromuscular Community
We were thrilled to welcome Member for Drummoyne, Ms Stephanie Di Pasqua MP to the MDNSW office earlier this month. Stephanie is already backing our work to create a more inclusive future – bringing the voices of our neuromuscular community into Parliament and helping more people access life-changing programs like camp.
It’s energising to have passionate advocates like Stephanie in our corner as we push for greater visibility, access and inclusion for our community.
Neurological Alliance Australia Collaborate for Change
We recently joined forces with the Neurological Alliance Australia to help shape a national action plan for people living with neurological and neuromuscular conditions.
At a workshop hosted by the University of Sydney’s Brain and Mind Centre, advocates, researchers and organisations gathered to draft a blueprint for better awareness, care, support and research. Our own Senior Community Support Specialist, Carolyn Campbell-McLean, proudly represented MDNSW in the discussion.
The next workshop will be held on 22 July – World Brain Day – with plans to present the final blueprint to parliament later this year.
The new Peer Connect Calendar for July to December 2025 is here! Check out all the upcoming events and opportunities to connect with our community.
Register for all our events by emailing info@mdnsw.org.au or calling (02) 9888 5711.
🎄 SOON: Christmas in July 🎄
WHEN: Sat 5 Jul, 12–3pm
WHERE: Ryde Eastwood Leagues Club
Join your peers and celebrate the chilly season with great food and company at the Christmas in July social lunch on Sat 5 July 12–3pm. Expect laughs, games, prizes and fabulous festive fashion – ugly sweaters and elf ears encouraged! Bring along your family and carers, the more the merrier. RSVP by July 2.
Mums Wine & Chat
WHEN: Thurs 10 Jul, 7:30–9pm
WHERE: Online
Take some well-deserved time out and connect with other mums of children living with neuromuscular conditions in a relaxed, supportive space. Connect, share tips and unwind with other community members. New faces are always welcome! Join us on 12 June via Zoom.
Adulting with an NMC InfoShare
WHEN: Wed 23 Jul, 7–9pm
WHERE: Online
We’re diving into all things ‘adulting’ with a neuromuscular condition (NMC) in the next InfoShare. From higher education and career pathways to navigating independent living, join us for real talk, practical tips and shared experiences, plus hear from an array of guest speakers!
SMArties
WHEN: Sat 9 Aug, 12–3pm
WHERE: Club Parramatta
Our next SMArties catch up is happening at Club Parramatta. 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. P.S. Lunch, courtesy of MDNSW.
Power Hour
WHEN: Thurs 24 Jul, 4–5pm
WHERE: Online
Power Hour is a regular peer catch-up for young men with Duchenne muscular dystrophy. The agenda? Part life advice, part gear chit-chat and part laughter. The Jul-Dec 2025 session dates are now live in our updated Peer Connect Calendar, which you can check out here.
Young Adults Retreat
WHEN: Fri 14 – Mon 17 Nov
WHERE: Atura Blacktown
Our next Young Adults Retreat dates have been locked in! Join us from Friday 14 – Mon 17 November at Atura Blacktown. This getaway is fully-funded, including meals, accommodation, equipment hire and activities, meaning you don’t need to use your NDIS funds for this retreat! You’ll only pay a $120 non-refundable registration fee to secure your spot.
The Energy Charter launches Life Support Power Outage Plan
For people using medical equipment at home, a power outage can be life-threatening. With increasing extreme and unpredictable weather, it’s important to be prepared for outages. The Energy Charter is asking you to complete 2 steps to prepare: Check and Plan. Complete a checklist online covering key areas like safety essentials, comfort and surroundings. Then prepare your Power Outage Plan (remember to print it or share with a friend) so you’re ready when the power goes out.
NDIS Funding Periods Legislation Changes
From 19 May 2025 the NDIS introduced a change in how funding is released in new or reassessed participant plans. Instead of receiving the full budget upfront, funding is now being released in smaller chunks called ‘funding periods’ which are generally three months long. Funding periods aim to help participants manage budgets more effectively. Look out for an email from the NDIA CEO with key information and reminders about the supports included in your plan.
Canberra Clinic Offers Specia-lised Neuromuscular Care
A dedicated neuromuscular clinic is now operating at Canberra Health Service, offering diagnosis, allied health, genetics and specialist support. It aims to provide people with access to coordinated care like exercise physiology, cardiology, respiratory services and clinical trials. To access the clinic, you’ll need a referral from your GP sent to Dr Lahoria in the Neurology Department at Canberra Hospital.
Physical Disability Council of NSW Workshops 2025
The Physical Disability Council of NSW (PDCN) runs free online and in person workshops and social events for people with disability, their partners and family. The workshops are to help people access continued support, build their skills and connect with others who have shared similar experiences. PDCN is running six online workshops in July covering topics including personal growth, NDIS updates and employability.
Prince Charles Hospital Recruiting Volunteers with Myotonic Dystrophy
The Prince Charles Hospital is running a research study on the lived experiences of Non-invasive Ventilation (NIV) (CPAP and BiPAP) treatments in people living with Myotonic Dystrophy. The goal is to find ways to improve this therapy. You can participate if you’re a current or previous NIV user, familiar with the treatment, or a caregiver or family member. The session is a 30-60-minute phone or Zoom call.
Get Free Tickets to the Annual ‘Kids Big Fun Day Out’
The Parramatta Lions invite children with special needs, their families and carers to the ‘KIDS BIG FUN DAY OUT.’ It will be held at Wentworthville Leagues Club on Sunday 13 July 8am – 5pm. Enjoy three shows at 10:30am, 12pm and 1:30pm featuring magic and more! Families needing any assistance are encouraged to arrive 30 mins early. RSVP by Thursday 10 July and let us know how many tickets you need.
Thanks to our Official Partners
