Welcome from the CEO
Welcome to your May edition of Talking Point. What a busy month it has been! I am so excited that some of our programs can be ran in person again, and boy have we bounced right back to it!
Be sure to read our recaps of Adventure Camp and the newly named Lads by the Lake weekend getaway. In the online space, we held our Spooky Trivia night and Limb Girdle MD Peer Connect session, both full of great conversation, fun and support.
Ahead of us, we're looking forward to holding our fully booked Peer Connect Retreat this weekend, as well as our Mums' Retreat next month, which has an exciting new venue! There's also a day trip to the ATSA Independent Living Expo planned for next week, which is a great opportunity to learn what's new in the market as well as catch up with some peers.
We have plenty of news for you in the Get Involved and Community News sections, so be sure to scroll through to those for important updates.
I'd also like thank our wonderful volunteers in the MDNSW community for their continued support and generosity. It's National Volunteer Week and we really want to show our appreciation, so we've made a little thank you video for you.
As always, take care and enjoy the read.
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:
New April - June 2022 Calendar out now!
Check out our Peer Connect Calendar giving you a look at what's scheduled for the next three months!
Join us for a trip to the ATSA Independent Living Expo
This month for Peer Connect Info Share, join your MD mates for lunch and to check out the displays, innovations and services at the ATSA Independent Living Expo at Sydney Olympic Park, on Wednesday, 25th May from 11 - 2:30pm.
See the latest in assistive technology, mobility solutions, pressure care, employment support, accessible recreation/holiday ideas, modified motor vehicles and a lot more. Check out the free Seminar Program located next to the exhibition floor. Share your reviews of products and services with others and get the lowdown on how your peers solve problems, and just catch up for a chat in real life!
Adults with Limb Girdle MD meet up
MDNSW members with Limb-Girdle MD got together online last week to meet and connect. It was wonderful to welcome some new people to the group, including participants from the Illawarra, Hunter and Riverina. It was a really lovely evening of support, sharing of story and learning from each other. Topics included developments in treatments, genetic counselling, managing personal care and toileting, accessible pools and advocacy issues.
One participant shared raw feelings about his decision to take the step of coming along to the group:
"Tonight is my first time coming in contact with others with MD. Hearing about the experiences of Ray and Fran, that they are still getting about gives me a lot of courage. I’m feeling a bit emotional!! I am so glad Carolyn called me to invite me along and I just said yes! Carolyn replied with ‘It takes bravery to front up to your first Zoom meeting, and everyone was so pleased to meet you!"
Great costumes and lots of laughs at Spooky Trivia
What do you get when you take a Werewolf, a Black Cat, Devil, Zombie and Zorro? An accessible, comfortable and fun evening of Trivia Night of course!
There were lots of laughs and witty banter last Friday the 13th at our fun online social event.
MDNSW staff joined Peer Connect participants for two rounds of questions, with the 'genius' Andrew as the overall winner, Ellie taking out best Zoom background, and Bodene with her mascot Thor by her side. Our CE0 Charlotte was crowned best dressed by devilish MC Caz, and Quizmaster Laura moonlighted as Zorro. Our lucky winners should check their inbox for their prize this week!
A recap of our newly named 'Lads by the Lake' Weekend
Earlier this month, six of our young male members living with MD set off up the coast for a weekend of catching up with each other, increasing their independence and sharing a laugh and a good time.
Collectively they planned their menu and tried their hand at cooking with their favourite recipes. Opting for a more contained trip, they spent the time playing board games, watching some critical sporting matches and going for strolls along the waterfront. After much deliberation we have finally landed on a new name for this inaugural trip... 'Lads by the Lake.'
L-R: Patrick, Scott and Brandon perfecting their cooking skills
L-R: Patrick, Kobe and Brandon going for a stroll with carers
John's first time at Adventure Camp
Our Adventure Camp was held in April, and for 7 year old John who lives with Duchenne MD, it was his first time attending. We thought we’d ask him about his experience!
Q: Was it scary going to your first camp?
JOHN: No, it was exciting. I was a little bit nervous about meeting new people.
BRYONY (Mum): I was a bit nervous as he’d not been away overnight without us before, but I knew he was in good hands.
Become a Team MD legend, like Scot and Katie
A big THANK YOU to our community fundraisers – Scot and Katie, who challenged themselves on the weekend in support of their loved ones with MD.
Scot shaved his head on Saturday, 14 May in support of people living with a neuromuscular condition, including his nephew Hugh Shipman who turned 18 on the day.
Katie ran in the Sydney Half Marathon on Sunday, 15 May in honour of her friend, Sarah Jenkins, who lives with a neuromuscular condition.
“Despite Sarah's disability she gets up everyday with a can do attitude and continues to live life to the fullest. Having been part of her life for the last 4 years it has motivated me to get moving everyday and be so grateful for my ability to move. I am running for those who can't.”
If Scot and Katie's stories have inspired you, why not create your own challenge today? Every dollar raised goes straight towards supporting our amazing neuromuscular community!
Happy National Volunteer Week!
A huge THANK YOU to our fantastic and dedicated volunteers who gave their time, skills and energy to empower, connect and support our neuromuscular community throughout the year!
Whether it be through our camp programs, fundraising activities, donation box collection, creative projects, office jobs or raising awareness as an amazing community ambassador - we appreciate you and think you're all LEGENDS.
Our work wouldn’t be possible without our wonderful volunteers! From everyone at Muscular Dystrophy NSW – Thank you for being you and for volunteering with us.
Learn more about National Volunteer Week here and watch our thank you message below.
Registration closes soon for Summer Camp
Our Summer Camp in Winter is just around the corner (7-10 July), so if you're aged between 6-18, living with a neuromuscular condition and use a power wheelchair for mobility, then register today to secure your spot!
Camp is about kids stepping outside their comfort zone and learning to believe that they are strong individuals, capable of achieving remarkable things.
There are a variety of activities to choose from that suit all ages, personalities and abilities.
Screenability returns to the Sydney Film Festival
Screenability will be returning to Sydney Film Festival for its sixth year from June 8-19 with tickets on sale now!
Presented in collaboration with Screen NSW, Screenability provides a platform for filmmakers with disability to put their stories on the screen on their own terms. In both documentary and fiction, these films put a spotlight on people with disability and their experiences.
Dan (left) and Jamieson (right) with their gold medals
Aussies win at Boccia World Cup
CONGRATULATIONS!!! What an amazing performance from both Daniel Michel and Jamieson Leeson (members of our MDNSW community) on winning GOLD in the pairs competition at the World Cup in Rio!
An extra big CONGRATS to Dan for also taking out the individual gold medal. You both make us and all Aussies so proud.
Be informed when you vote this weekend
With the federal election coming up this Saturday, 21 May 2022, the Physical Disability Council of NSW have written a handy blog post providing an overview of where each political party is putting their focus. Be informed when you vote - check it out!
New Clinical Trial Finder launched
We have exciting news! A new Clinical Trial Finder website has recently been launched by The Royal Children's Hospital, Melbourne and funded by Save Our Sons Duchenne Foundation.
It has a list of every existing and pending clinical trial for neuromuscular conditions in Australia, and detailed summaries of each trial so you can make an informed choice.
Thanks to our Official Partners
