Welcome from the CEO
Welcome to a new year and the first edition of Talking Point for 2023!
We've hit the ground running here at MDNSW, with a range of great peer connect and community engagement activities coming up for you all to get involved in.
Next month, we'll be celebrating the women in our neuromuscular community, holding a High Tea luncheon on International Women's Day (7 March), followed by our popular Mums' Retreat (24-26 March). Be sure to sign up quickly if you'd like to attend as places are limited for both.
March also sees the return of our annual community fundraising event, the Big Red Roll + Stroll, on Sunday 19th March. This year we will be holding the event in-person for the first time at Parramatta Park, so get excited!!!
On the Camp front there's still time to register for our Adventure Camp happening in April. It'll be a fun-filled time for all, and we are excited to see some new and familiar faces there!
Last but not least, on behalf of our neuromuscular community, I'd like to thanks all of you who donated to our Christmas appeal, featuring Surf Life Saving Club Patrollers, Scott and Patrick. Together we raised over $16,000, which will go such a long way and we are so grateful.
I hope you enjoy the read and all that is to come this year.
Yours sincerely,
Charlotte Sangster, (she/her)
CEO, MDNSW
What's on in Peer Connect?
Peer Connect is a collection of events and groups designed to provide a space for our community to support, share and learn with each other… here’s what’s on:
Check out the January - March 2023 Calendar!
Check out our Peer Connect Calendar giving you a look at what's scheduled for the next three months!
International Women's Day High Tea
Women living with neuromuscular conditions, mums, sisters, family carers, friends & colleagues are invited to come together to celebrate International Women’s Day 2023 on Tuesday 7th March from 12-3pm in Bicentennial Park.
WHAT’S INCLUDED?
- Sweet & savoury high tea, wine, beer, soft drinks, tea & coffee
- Speaker panel - Strong Women in the MD Community
- Free & accessible parking on-site
Limb Girdle MD Connect
We are holding an online peer connect session for adults with Limb-Girdle MD on Tuesday, 14th March 2023
Time: 7:30 – 9pm
We’d love you to join in, meet new people, share experiences and information, and connect with others who face similar challenges.
Mums' Retreat is on again!
Enjoy a weekend for you to get away and connect with other mums; to recharge with some time-out in great company!
Held from Friday 24 - Sunday 26 March 2023, this year's Mums' Retreat will be held in Blackheath, in the Blue Mountains, just perfect to relax or explore.
Last chance to register for 2023 Adventure Camp
Our Adventure Camp will be held from the 10 - 14 April 2023 in Stanwell Tops.
Camp gives kids aged 6-18 living with a neuromuscular condition who are independently mobile, the chance to experience teamwork and the thrill of a challenge over five fun-filled days bonding with their peers, and reaching a huge sense of empowerment, achievement and inclusion.
Be the first to find out when you can register
Our Big Red Roll + Stroll annual community fundraising event will be taking place in person on Sunday 19th March 2023!
Get together and wear red, white or blue to celebrate your neuromuscular community at Parramatta Park, by completing the 3km loop and enjoying all the fun of the Event Village afterwards.
Virtual participation will also be available if you can't make it in person.
Thank you for supporting our Christmas Appeal
Our Christmas appeal shared the fantastic story of good mates Patrick and Scott, who met at MDNSW Camp and have recently become the pioneers of a new project that saw them become Coogee Surf Life Saving Patrollers.
Thank you to everyone in our neuromuscular community who supported this story by donating to the appeal, together we have raised over $16,000 for our neuromuscular community. This funding will help us continue to develop more life changing programs, like this one, for people living with neuromuscular conditions.
In fact, we're partnering again with our friends at the Coogee Surf Life Saving Club to give the next wave of future patrollers the chance to participate in the voluntary training program. Find out more by contacting Mitch Taylor on 02 8986 9004 or at mitch.taylor@mdnsw.org.au
Powerchair Football Community Program
Get involved, make new friends, challenge yourself and most importantly have fun at the Sydney FC Powerchair Football Open Days!
Head along to Valentine Park on the weekend of the 11 & 12th February and give powerchair football a go. Contact foundation@sydneyfc.com to book your free place now!
Have your say on the NSW taxi system
The NSW taxi system isn’t working for people living with disability and the Physical Disability Council of NSW wants to know why!
The new Taxi Transport Subsidy Scheme, aka Taxi Card, has brought mixed results and they want to hear your experience. You can help by filling out this user experience survey on the Taxi Card and have your say!
2023 Rare Disease Day
There are now less than 30 days until 2023 Rare Disease Day (28 February). Rare Disease Day is a global movement focused on advancing equity in healthcare, social opportunity and access to effective diagnosis and treatment for the 300 million people worldwide—including an estimated two million Australians—living with a rare disease.
Summer Camp Wrap Up
In December last year, we held our Summer Camp at Narrabeen with 25 children who are powerchair users attending from all across NSW. We had 3 brand new campers who joined us for the first time along with many long time campers keen to catch up with old friends.
Some of the highlights were swimming, making authentic Turkish Mosaic Lamps, and having a go at Powerchair soccer. Unfortunately, our camp was cut short due to positive COVID cases so we can’t wait for Summer Camp 2023. We were so sorry to disappoint everyone and really appreciated your understanding. We can’t wait to see you again for Summer Camp 2023!
Luca, Riley and Blake designing a Superhero costume with recycled materials
Luca and Finn swimming
-ENDS-
Thanks to our Official Partners
