Welcome to our May issue of Talking Point!

How quickly has time flown! I can’t believe we are almost halfway through the year.

Firstly, I am very excited to announce that applications for the MDNSW PhD Research Scholarships are now open! At MDNSW, we understand that ongoing research is vital to understanding neuromuscular conditions and identifying new diagnosis and treatment options. We are absolutely delighted to be teaming up with Hearts and Minds Investment Group on this venture. Read on to find out more.

In case you missed it, we are also busy planning our biggest fundraising event, Big Red Roll & Stroll! Events like these are vital in supporting our programs and events and we would love our community to come along on event day 23 June at Parramatta Park to support our fundraising efforts! Register here or read below for more.

Our incredible team and I have been working hard and fast behind-the-scenes to deliver a host of programs for you and your loved ones! We have our upcoming ATSA expo visit, Maker’s Day, Young Adults Retreat and Adventure Camp all coming up over the next few months!

We have also partnered with Coogee Surf Life Saving Club again on a Surf Life Saving Traineeship exclusively for our community! Check it out below.

Thank you for all your support. We are grateful to have such an engaged and close-knit community and I look forward to seeing you all soon at one or our many events!

Yours sincerely,

Charlotte Sangster, (she/her)
CEO, MDNSW

MDNSW PhD Research Scholarship applications are now open!

In partnership with Hearts and Minds Investment Group, MDNSW is now offering two full-time postgraduate scholarship opportunities for research into neuromuscular disorders.

The primary objective of the PhD scholarship program is to support research that will increase our understanding of neuromuscular conditions and help to identify new diagnosis and treatment options.

If you or someone you know might be interested in our PhD Scholarships, click the Learn More button now. Applications close COB 28 June 2024. 

“The skills that you learn from a PhD can be applicable to so many areas. The neuromuscular field is a small one but there are always exciting developments and the neuromuscular community is a small, close-knit and positive community.”

– Professor Kristi Jones, 1996 MDNSW PhD Scholarship recipient & Head of Department of Clinical Genetics, Children’s Hospital Westmead.

Peer Connect Retreat Newcastle 2024

“I just feel like you’re included for the weekend... like everyone’s in the same sort of boat. It’s just fun. Things are organised. It's easy, you don’t have to plan – which is a lot of planning you have to do in your life. Just catching up with everyone, what’s happened over the last year or so (has been lovely).” 
- Leah, Peer Connect Retreat client

What a fantastic weekend we had for the Peer Connect Retreat in Newcastle in April, despite the weather! The retreat was full of laughs, stories, handy hints, comradery, and support – it’s what Peer Connect is all about!

Four couples joined the 20 retreat participants for the Welcome dinner on Friday evening. After a delicious 3 course meal and exceptional service from the team at Rydges Newcastle, we played Join the Dots, swapped tables to mingle and finished the night with a heartfelt sharing circle. Some participants were definitely not keen to go to bed!

After a lovely brekkie, we set off along the Newcastle foreshore. A little rain (think torrential downpour) didn’t stop us from having fun! That afternoon we regrouped inside at the hotel for an afternoon of crafts and movie trivia. Saturday night we joined all the friendly locals at the Honeysuckle Hotel with great food! Back at the hotel the domino tournament was a bit of friendly competition! The buffet breakfast was definitely a favourite on Sunday morning, before we shared our experience of the weekend and what Peer Connect means to us.

We hope the participants enjoyed relaxing and exploring, socialising and chilling out. The feedback provided on the Sunday morning was powerful and MDNSW is keen to increase the number of retreats each year - so watch this space!

Upcoming Peer Connect Events

InfoShare: ATSA Expo, Wednesday 22 May

Join us at ATSA! The Peer Connect team will take a trip to the Assistive Technology, Rehabilitation and Aged Care Equipment (ATSA) Expo on Wednesday 22 May 2024 at 11am. Learn, explore and share knowledge at one of the country’s most comprehensive events for people living with disability.

Register your interest now and contact our team info@mdnsw.org.au or call (02) 9888 5711.

FSHD Friends, Thursday 6 June

If you live with FSHD, or are a family member of a person with FSHD, you're invited to come along to our FSHD Friends peer group. It's a chance to make new connections, share stories and hear about some great life hacks and resources for people with FSHD.

Date: Thursday, 6 June
Time: 7.00-8.30pm

Please RSVP to info@mdnsw.org.au or (02) 9888 5711 to register and receive the link for Zoom. If you need any assistance with technology set up, please let us know and we would be more than happy to assist. Hope to see you there!

Maker’s Day, Friday 14 June

Our annual Maker’s Day is back again for the third year running! Join your peers for a day of relaxation, creativity and socialisation – create coasters, decorate your own vintage decanter and a light lunch included!

This FREE event will be held at Dooleys Club in Lidcombe on Friday 14 June from 10:30am – 3pm. The venue is wheelchair accessible, has free parking on site and is close to Lidcombe train station.

To register for this event or for more information please contact info@mdnsw.org.au or (02) 9888 5711. RSVP by Wednesday 5 June.

Registrations are now open for the Big Red Roll & Stroll! Sign up today!

The Big Red Roll & Stroll is BACK and BIGGER than ever and we want you to get involved, make a different and celebrate our neuromuscular community!

Get your family and friends together and join us on event day 23 June at Parramatta Park - there will be live music, face painting, merch and so much more. If you can’t make it, no worries! You can host your own event or participate virtually.

Register now below! Oh and if you do it before 17 May, you’ll be in the draw to win 1 of 3 $100 VISA gift cards – bonus!!!*

*Terms and conditions apply.

Meet our Big Red Roll & Stroll Ambassadors for 2024!

Introducing this year’s Big Red Roll & Stroll ambassadors… John, his mother Bryony, Jaxon, Kieran and Tracey!

John & mother, Bryony
For John's mother Bryony, the programs and events MDNSW ran were the piece of “connection” she and her family were missing.

From fundraising with people dressed in inflatable dinosaur suits to completing the walk as a family, the most important take away for John and his family is knowing that people care and are actively getting involved to make a difference.

Jaxon
18-year-old powerchair footballer Jaxon has been a longstanding member of the MDNSW community since 2008. Currently playing for the Western Sydney Wanderers, Jaxon has also just launched a podcast "Powered by Football,” all about powerchair football. Jaxon’s highlight of being a Big Red Roll & Stroll ambassador is having the opportunity to celebrate the community he is so dearly passionate about.

Kieran
A seasoned powerchair hockey player at only 25 years of age, Kieran has represented Australia for the World Cup globally as both vice-captain and then captain of the Australian Sliders team.

When asked what he hopes to achieve by participating in this year’s Big Red Roll & Stroll, Kieran hopes to “encourage people living with a disability to live their life to the fullest and try new things.”

Tracey
Tracey is the mother of two children with Muscular Dystrophy and has participated in the Big Red Roll & Stroll twice! Tracey has once even participating in the Big Red Roll & Stroll virtually from Western Australia!

Tracey’s words of encouragement for anyone considering taking part this year are simple: “go ahead! It’s such an inclusive, inspiring, empowering day!”

For more information on Big Red Roll & Stroll and how to get involved, click below.

Coogee Surf Life Saving Traineeship

Sun, sand and saving lives – sounds like summertime to us! Back for another year – MDNSW is partnering with Coogee Surf Life Saving Club once again to promote an inclusive surf lifesaving force. A jam-packed programme filled with activities such as supervising first aid delivery, learning radio communication and executing beach patrol.

We spoke to Scott, who participated in the past and has been asked to help lead the program this year! His highlight of the course has been the sense of community and being able to give back. He’s even been asked advice on how to make the Surf Life Saving Club more accessible for people who live with MD!

Want to get involved and become a Surf Live Saver? Contact our team on info@mdnsw.org.au or phone (02) 9888 5711 for more.

Neuromuscular Information & Research Day, Saturday 24 August

Hear the latest research and medical info along with lived experience stories from your neuromuscular community. Registrations open soon! Contact info@mdnsw.org.au for more or visit the below for the latest information.

Adventure Camp, Wednesday 17 July - Saturday 21 July

Make new friends, gain confidence and most importantly… have fun! Adventure Camp is BACK and there’s still a few places 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!

Shhh, you heard it here first! Summer Camp is back. Pencil it in your calendars – our next Summer Camp will take place 13-17 January 2025 at Sydney Academy of Sport and Recreation in Narrabeen, NSW. Get in early and secure your spot. Contact our team on info@mdnsw.org.au or call (02) 9888 5711 now.

Duchenne Muscular Dystrophy Research Application 

The University of Queensland and Save Our Sons Duchenne Foundation are looking for young adults affected by Duchenne to help design a smartphone app to assist with self-care in the transition phase and beyond. Your input will help create a meaningful, and essential, tool.

For more information about how to get involved, email Dr Lee Woods lee.woods@uq.edu.au.

Hydrotherapy for Duchenne Muscular Dystrophy Webinar

Keen to learn more about hydrotherapeutic benefits for Duchenne Muscular Dystrophy? Join Gateway Physiotherapy’s webinar on Saturday 29 May at 6.00pm.

Presented by Michelle Miao, an experienced Doctor of Physiotherapy, the webinar will include information about hydrotherapy, its benefits, NDIS funding and much more!

Register here for access to the webinar.

Share your NDIS experience & shape future support coordination practices!

A PhD student with muscular dystrophy at the University of Tasmania is conducting research on how NDIS-funded support coordination services affect the rights and freedom of people with muscular dystrophy to have control over their lives and be included in the community.

The study aims to discover ways to improve support services for people with muscular dystrophy by learning about their experiences and interactions with support coordination services.

NDIS participants aged 18 years old and older with muscular dystrophy who have used or are currently using support coordination services are invited to participate in online interviews. Interested in learning more and participating? The information sheet and consent form can be found here.

For any questions about the study, contact Professor Sue Kilpatrick, Primary Supervisor at sue.kilpatrtick@utas.edu.au.