Welcome to your August issue of Talking Point! 

We have some incredible achievements to celebrate from our community, including a determined young man who has been recognised for completing the most challenging level of the Duke of Edinburgh’s International Award Program. Check out his story in our spotlight section!

Over the coming months in your Talking Point newsletters, you’ll meet the faces behind MDNSW – from familiar faces and community champions to the behind-the-scenes team keeping everything operating and thriving. This time, we chat to a well-known and loved staff member in honour of SMA Awareness month.

Speaking of our team, on behalf of our wonderful Service Delivery Manager Allyce and her family, I am absolutely delighted to introduce baby Oskar. Welcome to the world little Oskar!

Plus, sporting groups across NSW are hosting ‘Come & Try’ days, including powerchair hockey, powerchair football and boccia. Learn more in our community news below or on our social media @musculardystrophynsw.

I hope this issue encourages you to connect and get involved!

Yours sincerely, 

Jess Henry

Jess Henry
CEO, MDNSW

The Future of Neuromuscular Care Unpacked at NIRD

WHEN: Sat 23 Aug, 1–4:15pm

WHERE: Online

Want to know where neuromuscular care is headed? This year’s NIRD will unpack the latest updates in clinical research, current trials and emerging treatment pathways.

We’re excited to announce two must-see research sessions:

1. Australian Neuromuscular Disease Registry Update with Neurologist Dr Eppie Yiu.
2. Clinical Research and Treatments presented by Neurologists Dr Dennis Yeow and Dr Aicee Calma.

Whether you're newly diagnosed or deeply embedded in the community, you'll come away with valuable insights.

There will be lots of great takeaways for people living with an NMC!

Download the 2025 program →

Join or Renew Your Membership Today and Help Shape the Future of MDNSW

Whether you're renewing or joining for the first time, now’s the perfect moment to become a paid MDNSW member and have your say in where we’re headed.

For just $22 a year, you'll:

• Have voting rights at our AGM
• Influence the direction of MDNSW
• Show your commitment to a strong, united neuromuscular community

While membership is optional and won’t affect your access to programs and services, it signals that you care about a future where our community has a stronger voice and lasting impact.

Join or renew today and help us grow stronger, together.

Get to Know Carolyn

Say hello the friendly and familiar face of Carolyn, our Senior Community Support Specialist and Peer Connect Program Lead. She’s our resident networker, always linking others to the right networks, supports and communities.

“We’re all living the journey,” she says. “Our paths may be different, but the bond we share is special and unique.”

Living with Spinal Muscular Atrophy (SMA) for 48 years, Carolyn has a unique perspective of the challenges and joys of life with a neuromuscular condition.

Her mission? Combining her superpowers of lived experience, social work, education and advocacy to make the world a better place for people with SMA.

This SMA Awareness Month, Carolyn wants the world to know that “the sky’s the limit for people living with SMA. We’re lawyers, graphic designers, creators, social workers, musicians and anything we want to be.”

Off the clock, you’ll find Carolyn enjoying life’s best bits – catching shows and tunes, scrapbooking, travelling and chasing the next great story to share.

Gold Level Unlocked for Scott

Earlier this month The Duke of Edinburgh’s International Award celebrated outstanding young Australians at their Gold-Level Ceremony, and our very own Scott Green was among them!

Since starting his award journey in 2015, Scott has taken on everything from gardening to scrapbooking to travelling abroad and raising awareness about bullying and inclusion.  

As Scott says, “The Duke of Edinburgh’s Award has changed my life as it has taught me if I set my mind to something and persevere, I can achieve it.”

Joined by his proud mum Suzee and our Senior Community Support Specialist, Laura, Scott was recognised for his remarkable achievements. He’s a true example of growth, courage and community. We couldn’t be prouder!

A Wheelchair Made Just for Shiva

Last week was a special moment for young Shiva as he received his brand new Zippie Xscape wheelchair, which was generously donated by Sunrise Medical.

Over the past two months, Sunrise Medical worked closely with Shiva’s Occupational Therapist to ensure the chair was perfectly customised to his needs. With his mum and sister right there to share in the moment, Shiva’s smile said it all when the chair finally arrived.

We are incredibly grateful to Sunrise Medical, Sydney Zoo, William Buck and everyone who made this special moment possible. It was a heart-warming afternoon celebrating an incredible young man and his beautiful family.

SMArties Get Together for SMA Awareness Month

To mark SMA Awareness month, MDNSW hosted a warm and welcoming SMArties lunch at Club Parramatta. Several of our most social SMA sisters caught up over a long lunch, building deeper connections and sharing experiences around self-advocacy, treatment varieties, support recommendations and accessible travel solutions.

“It was a great day to reconnect with familiar faces and connect with new.”

“I really appreciated the emotional support and exchanging experiences with others who understand what I’m going through."

SMA Awareness Month is about building community and strengthening peer support, so people with SMA can learn from each other, become experts in their own lives, and live fully, strongly and resiliently.

Power Hour

WHEN: Thurs 18 September, 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.

Spring Roll & Picnic

WHEN: Sat 27 September, 12–3pm

WHERE: Eric Primrose Reserve, Rydalmere

With scenic views of the Parramatta River, celebrate the arrival of Spring with your peers! Join us for a relaxing roll along the Parramatta River cycleway, followed by a catered picnic lunch (BBQ and picnic food, and drinks) and fun activities!

Families, friends and carers all welcome!

*Please RSVP with the number of children and adults, and any dietary requirements.

Are You New to MDNSW?

WHEN: Tues 30 September, 7–8:30pm

WHERE: Online

Discover the range of supports available at MDNSW for people living with a neuromuscular condition, their support systems and loved ones. From Peer Connect groups to inclusive and adventurous camps and retreats, we’re here to help you find connection, support and belonging.

We’d love to welcome you into our community and help you feel right at home.

Women's Retreat

WHEN: Fri 31 October – Sun 2 November

WHERE: Rydges Newcastle

The Women’s Retreat is a special weekend for women living with neuromuscular conditions to rest, recharge and reconnect.

Held annually, it’s a chance to take a break away from daily life and focus on your well-being in a relaxed, supportive environment. With space to slow down, share stories and build meaningful connections, you’ll be surrounded by others who truly understand your journey.

You’ll leave feeling refreshed, inspired and part of a strong community.

Hunter Social Lunch

WHEN: Sat 1 November, 12:00 – 2:30 pm

WHERE: Newcastle CBD, Venue TBD

Join us for a relaxed, catered lunch designed for our community living with, or supporting someone with, a neuromuscular condition.

It’s a chance to meet new people in your local community, swap stories, and build connections that can grow into lasting friendships, support networks and shared adventures.

This social lunch is for people living with a neuromuscular condition, and their families.

Young Adults Retreat

WHEN: Fri 14 – Mon 17 November

WHERE: Atura Blacktown

Join us for the Young Adults Retreat from Friday 14 – Monday 17 November at Atura Blacktown. Now is the time to register and start planning your 1990s party costume.

We’d love your input in planning the retreat activities, just let us know in your registration email if you’d like to be involved!

This getaway is fully funded, so there is no need to use your NDIS funds.

New Project Helping People with Disability Build Co-op Businesses

Have interests in art, writing, baking, gardening, language and more, and want to start your own business?

The Australian Federation of Disability Organisations (AFDO), together with the Co-op Federation, has launched ‘Cooperative Communities’ – a 12-month program supporting people with disability to turn their skills and interests into thriving co-operative businesses.

With guidance from experienced mentors, participants can design and launch inclusive, sustainable businesses that contribute to meaningful work and stronger community connections. 

Read more →

Support and Self-Advocacy – Free PDCN Workshops in September

This September, the Physical Disability Council of NSW (PDCN) is offering free workshops.

Topics include:

• Speaking Up for Yourself
• Post-Traumatic Growth
• NDIS Updates (what’s changed and what you can buy)
• NEW! Nurturing Self (tools to improve your wellbeing)

Hear expert guidance from leaders with lived experience, connect with others to enhance your learning, and access follow-up support to keep you moving forward.

View September workshops →

ACT Locals – Discover Boccia, Australia’s Most Inclusive Sport!

WHEN: Sunday 7 September 10am – 1pm and Saturday 25 October 10am – 1pm

WHERE: AIS Basketball Courts, Leverrier St, Bruce ATC 2617

Ready to try something new? Boccia Australia is hosting free Come & Try days in the ACT for all ages, abilities and genders.

Experience the world’s fastest-growing inclusive sport, get active, meet others and have fun. No experience needed!

For more information, reach out to pathwaysnsw@boccia.com.au

Register now →

The Children's Christmas Party 2025

The Children’s Christmas Party returns this year! 2025 Parties include:

• Canberra: Sat 29 Nov, 10:30am – 2pm, Thoroughbred Park
• Newcastle: Sat 6 Dec, 10:30am – 2pm, Newcastle Entertainment Centre
• Sydney: Wed 10 Dec, 10:30am – 2pm, Rosehill Gardens Racecourse

Experience a spectacular spread of holiday entertainment including shows,  rides, photo opportunities and, of course, a visit and gifts from Santa!

*Eligibility: Children must be 0–12 years of age and be eligible for the NDIS to attend. Siblings cannot attend unless they also meet these requirements.

RSVP to jenny.smith@mdnsw.org.au with your name, your child’s name and age by Wednesday 17 September 2025.