Welcome to your October issue of Talking Point!
I’m excited to share our latest updates and insights with you in this month’s newsletter.
In the last month we have been busy attending various conferences and advocacy events, as well as hosting our own Young Adults Retreat and other online Peer Connect events! And if you've been keeping an eye out on our socials, you would've seen we've officially announced Community Day for 2024!
Read on below to find out more!
Thank you for being an integral part of our journey. Together, we’re building something great, and I can’t wait to see what we accomplish next.
Sincerely yours,
Charlotte Sangster
Charlotte Sangster, (she/her)
CEO, MDNSW
MDNSW Scholarship Winners Announced!
In exciting news, we are delighted to announce the winners of our PhD scholarships, awarded for their outstanding research projects aimed at improving the lives of people with neuromuscular conditions. These scholars are working on innovative studies that will have a significant impact on the diagnosis, understanding, and treatment of these conditions. Please join us in celebrating the following awardees:
Dr. Dennis Yeow
Project Title: Improving Diagnosis of Muscle Disorders Using Advanced Genetic Testing
Dr. Yeow is developing a new genetic test using advanced technology called Oxford nanopore sequencing, which can identify all the genetic changes related to these disorders in a single step. This will help patients receive a diagnosis faster, reducing the stress and cost of prolonged testing, and enabling earlier access to appropriate treatment.
Dr. Monica Marzouk
Project Title: Studying Fatigue in Children with Charcot-Marie-Tooth Disease
Dr. Marzouk’s project aims to develop a new tool, the CMT Fatigue Scale (CMT-FaS), specifically designed to measure fatigue in children with CMT. This tool will help doctors better monitor and manage this symptom, improving care for these patients.
Dr. Aicee Calma
Project Title: The Role of Clinical and Electrophysiological in the Management of Motor Neuronopathies in Adults
Dr. Calma’s research focuses on improving the care of adults with neurodegenerative disorders like Spinal Muscular Atrophy (SMA) and Motor Neuron Disease (MND). Dr. Calma’s study will follow patients with SMA and MND over 18 months, using clinical and electrical tests to observe changes in their condition. This research will help establish reliable methods for assessing treatment effectiveness, guiding better patient care.
We are confident that Dr. Yeow, Dr. Marzouk, and Dr. Calma’s groundbreaking work will lead to significant advancements in the field of neuromuscular conditions. Their research promises to make a real difference in the lives of patients, their families, and the broader medical community.
Congratulations to them all on this well-deserved recognition!
Membership Renewal
MDNSW Membership renewal is now available! Paid membership is just $22 per year and gives you voting rights and the opportunity to provide input towards the direction of MDNSW at our Annual General Meeting.
With your membership and support, we will continue to evolve, adapt, and empower our community for many years to come.
Thank you for being a vital part of Muscular Dystrophy NSW and supporting us to better serve our neuromuscular community.
Please note that paid membership is optional at MDNSW. By not taking it up, your access to our usual programs and services will not be affected.
Save Our Sons Duchenne Foundation National Duchenne Conference 2024
This September our team had the opportunity to attend the 2024 National Duchenne Conference organised by the Save Our Sons Duchenne Foundation. The conference was filled with informative and engaging seminars, and gave us a chance to connect with our community as well as our interstate counterparts and partner organisations.
Info Share - Presented by Biogen
Join us online on Tuesday 22 October at 7pm for our special edition of Info Share: A Medicine's Journey to Reach the Person in Need, proudly presented by Biogen!
This special edition of Info Share, will follow the journey of a medicine from research studies to availability in clinical practice for rare diseases, as well as the role that people with lived experience and their carers can play in this process.
Contact us now on info@mdnsw.org.au to reserve your spot!
COMING SOON: Heroes, assemble!
You play an important part in the fight against muscular dystrophy and can make a real impact in the lives of those affected. Whether it's hosting a fundraising event at home, a sausage sizzle fundraiser at school, an office fundraiser with your colleagues or participating in a challenge such as City2Surf, every effort counts. Your MDNSW fundraising team will support you on your mission! Show your support and be a hero within your community.
Keep an eye out for your brand NEW Community Heroes Fundraising coming soon! For more information, contact your fundraising sidekicks at fundraising@mdnsw.org.au
Adventure Camp 2025!
Exciting news – our 2025 Adventure Camp has been officially locked in!
WHEN: Sunday 13 – Thursday 17 April 2025
WHERE: The Tops Conference Centre, Stanwell Tops
Adventure Camp offers children aged 6-18 with neuromuscular conditions who are independently mobile a chance to experience the excitement of teamwork and challenge over five action-packed days. Campers will have the opportunity to bond with peers and gain a profound sense of achievement and inclusion.
Register your interest early by contacting us at info@mdnsw.org.au or call (02) 9888 5711.
Community Day
Mark your calendars! Saturday 30 November at 11am, we will be having our annual Community Day. Join us for face painting, goodie bags, and even a visit from Santa!
For more information, or to register, contact our team at info@mdnsw.org.au or call (02) 9888 5711.
Summer Camp - Save Your Spot!
Get in quick - Summer Camp is back for 2025 and spots are filling up quickly! Join us on Monday 13 January – Friday 17 January at Sydney Academy of Sport and Recreation in Narrabeen, NSW for some Summer Camp fun.
Spots are limited! Contact our team on info@mdnsw.org.au or call (02) 9888 5711 now.
PDCN Workshops
The Physical Disability Council of NSW are running a series of online workshops throughout October. These workshops are free for people with disability and their parents or unpaid informal supports.
Workshops will cover topics such as the NDIS, employability and expanding your potential.
NRL Abilities Unleashed
NRL Abilities Unleashed is a program by Disability Sports Australia that provides the opportunity for adults living with disability to experience a range of adaptive sport and recreation activities in a fun and inclusive environment.
Join on Wednesday 20 November for a FREE event, connecting people living with disabilities to NRL opportunities.
For more information contact abilitiesunleashed@sports.org.au
BridgeBio Study
BridgeBio are currently conducting a study to evaluate the safety and efficacy of long-term administration of BBP-418 in people living with Limb Girdle Muscular Dystrophy. If successful, BBP-418 may be the first approved therapy for individuals living with LGMD2I/R9.
FARA Australia Comedy Night
Get ready to laugh for a cause! Join FARA Australia for their first FARA Comedy Night!
For just $50, enjoy a night filled with laughter featuring three fantastic acts over two hours, all while supporting Friedreich Ataxia Research.
🗓 When: 7:30 PM
📍 Where: The Randwick Club, 135 Alison Road, Randwick
NDIS Events
The NDIS will be hosting a series of online engagement session throughout October and November on the changes to NDIS Legislation. The sessions will be for NDIS participants., families, carers, and anyone who may be within the disability community.
Thanks to our Official Partners
