Welcome to our June issue of Talking Point!

We have so much happening here at MDNSW!

We’re only a few days away from our annual fundraising event, the Big Red Roll & Stroll. We hope to see you and your families on Sunday the 23 June at Parramatta Park to celebrate and shine a spotlight on our wonderful community. There will be food, games, music and loads more! If you can’t make it, there are other ways you can support. For the entire week up until event day, we have a Dollar Match Week so all donations will have double the impact! Check it out below.

In the last month, we’ve hosted our Young Adults Retreat, Maker’s Day community event and our trip to the Assistive Technology, Rehabilitation & Aged Care Equipment (ATSA) Expo! Read on below to find out more.

We’re also still on the lookout for some community members to participate in a few upcoming events. If you’re interested in becoming a Surf Lifesaver, sign up to the Coogee Surf Lifesaving Training Program below! Keen on camps? Read below to sign up to our upcoming Summer Camp, Adventure Camp and you heard it here first… our next Young Adults Retreat!

Thank you for all your support and wishing you and your families all the very best.

Yours sincerely,

Charlotte Sangster

Charlotte Sangster, (she/her)
CEO, MDNSW

Big Red Roll & Stroll - It's Almost Time!

It’s almost time for the 2024 Big Red Roll & Stroll! We recently sat down with ambassador John and his family to find out what the Big Red Roll & Stroll means to them. You can watch the interview here! 
On Sunday, 23 June 2024 join us at Parramatta Park to raise vital funds and help shine a spotlight on our community!

Don’t forget, it’s not too late to donate! Help us make a difference in the lives of our neuromuscular community. With our dollar match program, every donation will be matched – meaning you have the chance to make DOUBLE the impact! 

EXCLUSIVE: My Experience with the Young Adults Retreat - Jaxon Taylor 

Our Young Adults Retreat offers young adults living with muscular dystrophy the opportunity to get out and about together and have fun with people their own age. Campers are given the freedom to plan their own program to promote choice and independence.

This year, our campers travelled up to Narrabeen for a weekend of laughter, friendship, and fun. We asked camper Jaxon Taylor to provide his account of the weekend. 

“Not long ago I attended my first Young Adults Retreat. As a proud graduate of MDNSW’s Summer Camps, I was entering new territory. Well, it was at the same venue, so it’s not NEW territory but you get what I mean...”  
– Jaxon Taylor 

Our latest edition of the Peer Connect events calendar is now available! Check it out below.

What's On!

We have some exciting events in store for you from July-December! We have our Christmas in July social lunch at Blacktown Workers Lusso Restaurant Saturday 20 July 12-3pm. We also have our upcoming Neuromuscular Information & Research Day. More details to come! This will be hosted virtually Saturday 24 August 1-4.30pm. If you would like to register to any of these events, please contact our team info@mdnsw.org.au.

InfoShare:
Accessible Travel 

Join your peers to chat about all things Accessible Travel. Topics include flying with a powerchair, accessible cruising, portable equipment, accessible vehicle hire, managing support workers, travel insurance, accessible accommodation and solving problems along the way. Share your handy tips and recommendations with your peers and bring along your questions to ask our brains trust! Contact info@mdnsw.org.au to register.

Maker's Day - Crafting Connections

Last week we held our 3rd annual Makers Day! 20 women came together at Dooleys Club Lidcombe for a day of connection and creativity, sharing and socialising. Some beautiful vintage decanters were decorated, coasters made with serviettes and pretty cards were stamped and punched! Our skilled volunteer Eliza supported people to learn the Cri-Cut machine to create all sorts of designs decorating purses, bags, keychains and even adding decals to one of our client’s wheelchair! Marie was thrilled with her puppies personalised pooch pouch! Amongst all the craftiness, participants caught up with each other, made new friends and bonded over the challenges of life with an NMC. And everyone loved the banquet! Looking forward to our next Makers Day.  

“Thanks for organising the day yesterday. It was so relaxed. I enjoyed the activities and chatting with everyone.” – Karen 

“Just want to say thank you again for such a fun-filled day. I’m super glad I went and was able to focus on something else.” - Marie 

Dad's Day

We partnered with Duchenne Australia to support this great initiative from Chris Carrero – a night out with the boys who just 'get it'. We supported a group of Dads with sons who live with neuromuscular conditions to get together for a fun night of go-karting and dinner. The Dads crew will meet again later this year - if you're interested to join the crew contact us on info@mdnsw.org.au or call (02) 9888 5711. 

InfoShare: ATSA Expo

Our Peer Connect team met up at the ATSA Independent Living Expo. We saw and tried the latest and greatest in assistive technology, for example an accessible campervan! A great turn out with ten members of our community, joining us for lunch and a browse around the expo. There were lots of exciting displays and new technology – from accessible car hire, powered wheelchair suppliers and even stalls for customised seating experts. It was a fun filled day with laughter, connection and even selfies with Dylan Alcott and Louise Savauge.  

Sonya and Bailey's Story

When Sonya was first told her new born daughter, Bailey, had been born with a neuromuscular condition, she didn’t think of the support their family would require.

After spending the past fourteen years as part of the MDNSW community – attending programs and meeting other like-minded families - Sonya and Bailey have found their lives filled with laughter, education and most importantly, support. ⁠ 

At MDNSW, we make it our mission to help create moments that matter for families like Sonya’s to live the life that they choose. To learn more about how you can support families like Sonya and Bailey's, click the button below.

Coogee Surf Life Saving Traineeship

Spots are still open for our Coogee Surf Life Saving Program! The Coogee Surf Life Saving Training Program  trains people living with Muscular Dystrophy to attain their SLS Radio Officers Award and Coogee Emergency Care Awareness, become surf lifesavers and participate in patrols. We recently spoke to Scott Green, who participated in the last program - be sure to read about his experience. 

For more information, contact info@mdnsw.org.au or call (02) 9888 5711.

MDNSW PhD Scholarships - Applications Open!

In 1996, Professor Kristi Jones was our very first PhD scholarship recipient! Now as a professor and Head of Department of Clinical Genetics at the Children’s Hospital at Westmead, Prof. Jones' career has gone from strength to strength. 

In partnership with Hearts and Minds Investments Group, applications are still open for MDNSW’s Postgraduate Scholarship for Medical Research into Neuromuscular Disorders! Fast-track your professional development and see your research make an impact first-hand within our community. 

If you or someone you know may be interested, apply now online or e-mail us at info@mdnsw.org.au for more. 

Shhh… our next Young Adults Retreat is coming up!

You heard it here first, we have officially locked in the dates for our next YA Retreat: Friday 11 October - Monday 14 October! Be one of the first to register to secure your spot. Contact our team at info@mdnsw.org.au. 

Adventure Camp, Wednesday 17 July - Sunday 21 July

Camp is more than learning new things and gaining new experiences - it's also about making friends and being connected with the community!⁠ Adventure Camp is BACK! Get in QUICK – there's only a few spots left! 

Adventure Camp gives kids aged 6-18 living with a neuromuscular condition and are independently mobile the chance to explore, learn and create fun-filled memories. 

WHEN: Wednesday 17 July - Sunday 21 July 2024 
WHERE: Tops Convention Centre, 51 Bendena Garden, Stanwell Tops 

Secure your spot and contact our team on info@mdnsw.org.au or phone (02) 9888 5711 for more. 

Summer Camp is Back - Register Your Interest!

Have you heard? Summer Camp is back! Our next Summer Camp will take place 13-17 January 2025 at Sydney Academy of Sport and Recreation in Narrabeen, NSW. Secure your spot now to make sure you don’t miss out! Contact our team on info@mdnsw.org.au or call (02) 9888 5711 now. 

Powered By Football

Our own community member and resident Instagram hacker, Jaxon Taylor, recently released a new episode of his podcast Powered by Football. A powerchair footballer for the Western Sydney Wanderers, Jaxon’s weekly podcast connects listeners with the world of NSW powerchair football. Be sure to listen along for interviews with players and Jaxon’s own knowledgeable insights.  

Boccia Australia

Boccia Australia have just released their Autumn edition of their newsletter Around the Courts. The newsletter covers everything that’s been happening in and around the boccia courts. You can read a special feature from NSW Head Referee, Ken Taylor, as well as recaps from boccia teams across the country as well as international recaps from Canada and Croatia!  

Abilities Unleashed Adults

Disability Australia are running FREE sports days for adults living with disabilities. The event Abilities Unleased provides the opportunity for adults living with disabilities to experience a range of adaptive sport and recreation activities in a fun and inclusive environment. The upcoming events will be held at Canada Bay and Mosman. For more information you can contact
abilitiesunleashed@sports.org.au. 

NSWPFA Powerchair Football Clinics

NSW Powerchair Football Association (NSWPFA) are running a skill development clinic on Sunday 7^th July for anyone who wants to come and try powerchair and learn new skills.

Following this, they will be running a monthly round robin competition that will cater for those new to the sport as well as existing junior players in the aim of developing skills across the board.

Both the development clinic and the monthly competition will be held at the Mt Annan Leisure Centre to help improve opportunities for participants in the South Western area of Sydney.