Welcome to your May issue of Talking Point! 

It’s hard to believe we’re nearly halfway through the year, and what a busy few months it’s been! We’ve already delivered some of our major programs including the Young Adults Retreat, Peer Connect Retreat, Adventure Camp, as well as countless Peer Connect events and information sessions.

It was a joy to see so many of you at Sydney Zoo recently for our biggest fundraising event of the year – the Big Red Roll & Stroll. The day was a fantastic success and I want to thank everyone who participated, donated or volunteered. Your involvement helps us raise vital funds to support programs for our community.

Meeting so many of you in person, long-time members of the community and new faces alike, was a highlight of the event. A heartfelt thank you to our incredible MDNSW team, who worked hard to make the day run smoothly and create a positive experience for all.

If you joined us, I hope you enjoyed exploring the zoo and experiencing the Glow festival afterwards. Don’t miss the event highlights later in this issue!

Looking ahead, we will be at the Sydney Disability Connection Expo at the ICC on 23-24 May. You can register for free, see the details below.

Thanks again for your ongoing support. I’m incredibly proud of the impact we’re making together and look forward to seeing you at one of our upcoming events!

Yours sincerely, 
Jess Henry

Jess Henry
CEO, MDNSW

Big Red Roll & Stroll is on the Move to $80k Target

On Saturday 10 May, more than 180 community members, friends, family and carers joined us at Sydney Zoo for our annual Big Red Roll & Stroll. What a spectacular day it was!

Our community turned the zoo into a red-hot celebration, as participants proudly wore their MDNSW beanies, bucket hats, scarves and t-shirts, with many adding extra flair with glitter and red hairspray. With your amazing support, we raised nearly $70,000 in funds that will go directly towards sending young people with neuromuscular conditions to our next Young Adults Retreat. 

A huge congratulations to the ‘Girls in Wheelchairs’ team, who led the fundraising effort with an incredible $11,500 raised! Special recognition goes to Natalie, our top individual fundraiser, who raised $4,783 to help young people live the life they choose.

We were honoured to have Paralympic silver medallist and community ambassador Jamieson Leeson join us on the day to lift spirits and rally support for fundraising.

Thank you to everyone who rolled, strolled, donated and cheered us on. Your support helps build a stronger, more connected neuromuscular community.

Fundraising will remain open until the 31 May, and we are very close to reaching our target of raising $80,000 for MDNSW. Can you help us achieve our goal?

Easter Lunch Brings Community, Conversation and Connection to Concord

On Sunday 27 April, six families gathered at MDNSW’s new office in Concord to celebrate Easter. The event brought together eight people living with a neuromuscular condition, 20 family members and three of our wonderful senior camp carers.

It was a warm and welcoming afternoon filled with connection and conversation, as families shared their experiences and stories. The kids got creative with Easter crafts – decorating pots, painting moulds and personalising their Easter bags – before teaming up for an egg hunt that encouraged cooperation and teamwork.

Families enjoyed a catered lunch, complete with hot cross buns, rocky road and Easter eggs, because no great catch-up is complete without chocolate! It was a chance for friends to reconnect and new families to feel welcomed and supported by the community.

Sydney Disability Expo

WHEN: Fri 23 – Sat 24 May, 10am – 4pm

WHERE: ICC Sydney

The countdown is on for NSW’s biggest disability and NDIS event – the Sydney Disability Connection Expo – and MDNSW will be there! Join us on 23-24 May for two days of assistive tech, services, live entertainment and fun activities including a scavenger hunt with prizes and free coffee. Stop by the MDNSW stall and join us for a relaxed social lunch on Friday at 11am. We’d love to connect. Free to attend – register now to secure your spot.

InfoShare: Accessible Travel

WHEN: Tues 11 June, 7pm

WHERE: Online

Come along to an informative session on accessible and inclusive travel, where we’ll discuss essential topics to help you plan your trip with confidence. We'll cover everything from booking inclusive accommodation and flights, to travelling with support workers, managing health needs, and finding the right travel insurance. Plus, get valuable travel tips from experts with lived experience! If you’re dreaming of a future getaway or want to better understand how to make travel more inclusive, register now!

Mum's Wine & Chat

WHEN: Thurs 12 June, 7:30pm

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.

Maker's Day at PHIVE

WHEN: Fri 13 June, 11am – 3pm

WHERE: PHIVE Parramatta

Get ready for a crafty and relaxing day at our upcoming Maker’s Day, held at PHIVE Parramatta. This time, we’re mixing things up with our very own ‘Paint n Sip’ session cafe-style! Sip on coffee or tea while you paint. No experience needed, just bring your creativity! Enjoy the company of your community at this free and accessible event, with lunch and materials provided. RSVP by 1 June

Your Community Awaits at FSHD Friends

WHEN: Thurs 19 June, 7pm

WHERE: Online

Join us for our FSHD Friends online peer connect session for people with FSHD and their families. It’s a great opportunity to share experiences, exchange information and connect with others who understand the journey. Please let us know if you need any assistance with technology setup, our team is happy to help.  

You're Invited to the Focus on Ability Film Festival

WHEN: Wed 10 Sept, 10:30am

WHERE: Liverpool Catholic Club Theatre, Prestons NSW

The ‘Focus on Ability’ film festival celebrates storytelling made by and featuring people living with disability. You’ll watch a hand-picked selection of short films from around the world that use narrative to change perspectives, spark conversations and celebrate ability. These powerful films have been created by Australian students, emerging filmmakers and professionals. And it’s 100% free! Bring your friends and family.

Rare Voices Australia Launches Rare Disease Support Program

WHEN: Thurs 22 May, 11am – 1pm

WHERE: Online

Rare Voices Australia is launching a new Peer Support project, co-designed with people who have lived experience of rare disease disability and diverse backgrounds. The project kicks off on 22 May with an interactive session for people living with rare disease to come together and share the resources and strategies they use to navigate needs across health, housing, employment and the NDIS.

Barangaroo Welcomed Changing Places Upgrade

Greater investments in Changing Places facilities across Australia are happening, including at the Crown Casino in Barangaroo. The new facility, located on Level 2, is equipped with a hoist and height-adjustable adult change table, privacy curtain and grab rails. Now, it’s a more welcoming and inclusive dining and entertainment precinct! Prepare for your visit to any Changing Places facility in Australia by visiting changingplaces.org.au.

Have Your Say on Cervical Screening Equity

WHEN: 15 May - 9 Jun

WHERE: University of Sydney or Online

The University of Sydney is running a consultation for people with disabilities and their supporters as part of the Enhancing Equity in Cervical Screening project. If you’re a woman or person with a cervix living with disability, your input can help shape future screening practices. Sessions run from 15 May to 9 June, online or in person. Participants receive a $60 voucher.