Monday 16th - Tuesday 17th, September 2024
Monday 16th - Tuesday 17th, September 2024
THE SAVE OUR SONS DUCHENNE FOUNDATION
2024 NATIONAL DUCHENNE CONFERENCE
Note: Registrations are now closed. For any event details, please refer to the information below.
We are so excited to bring the 2024 National Duchenne Conference, scheduled for Monday, September 16th, and Tuesday, September 17th, at Waterview in Bicentennial Park, Sydney.
This conference will feature some of the most prominent national and international industry experts and healthcare professionals, who will impart their knowledge about Duchenne.
The conference aims to give parents, young men living with Duchenne muscular dystrophy, and professionals an interactive experience with Australian and international experts.
Our team is working hard on crafting a comprehensive program to provide a well-rounded understanding and update of the Duchenne landscape.
More details about the conference and how to secure your participation will be released in the upcoming weeks.
The conference is of significant importance for both families affected by Duchenne and industry professionals, and we, as the peak body for Duchenne in Australia, are proud to be hosting it. We hope to see you all there!
FAQ
Need Help? Please read below for detailed assistance.
The Venue
When is it held?
Monday 16th and Tuesday 17th of September 2024.
Where is the conference held?
Waterview in Bicentennial Park - Bicentennial Drive, Sydney Olympic Park NSW 2127, Australia
How do I get to the venue?
- The venue is located in Bicentennial Park, Sydney
Olympic Park
- There are many forms of public transport when travelling into Sydney Olympic Park, including buses, trains and ferries.
- Centrally located in Sydney Metropolitan
- 15 minutes from Sydney CBD via Westconnex
- 18km from Sydney Airport
- 10-minute walk from Concord West or Olympic Park Train Stations
Does the venue have on-site accommodation?
No. However, there are other options nearby.
What accommodation options are nearby?
- There are multiple hotels within walking distance of the Waterview. These include: the Novotel, Ibis the Pullman, and Quest Apartments.
- Please mention "The Waterview" to receive your 10% accommodation discount.
- Save Our Sons is offering free accessible transport to and from the Waterview, from these hotels.
Does the Waterview have parking?
- Yes. There is plenty of parking on site for guests. Attendees will be given parking permits upon registration on the day, at no cost.
- NOTE: You will need to put the permit on the inside of your windshield.
Does the Waterview close its car park overnight?
Yes. However, the car park will stay open while Save Our Sons is hosting the event.
Is the venue wheelchair accessible?
- Yes, the Waterview is based on the ground level with ramps for wheelchair entry. There are also multiple disabled parking spaces in the carpark.
- The venue also offers wheelchair accessible toilets.
Will the event be cancelled due to weather conditions?
- The conference will be at the Waterview which is held indoors and will not be affected by adverse weather conditions.
Is there a dress code?
Smart Casual.
Registration
Who should attend the conference?
- Young men living with Duchenne (Recommended 16 years +)
- Parents who have children living with Duchenne.
- Professionals working in the neuromuscular field.
- Extended family/carers/support workers
When does the registration close?
Registrations close two weeks before the event (1st Sept.)
What are the registration fees?
Can I register for one day only?
Yes. Prices will vary.
Can I register for a family member?
Yes. However, we will need the individual details of the person attending.
Will there be childcare?
No. Any children under 18 remain the responsibility of parents, always.
NOTE: There will be no separate activities catering to young children.
Where can I find information about the event agenda and schedule?
Information will be posted prior to the event. There will be social media updates to let you know when the program is available.
Will I receive a physical ticket?
- No. Your name will be on the delegate list upon registration at the venue.
- If you are not registered, you will not be able to attend as numbers are limited.
Pricing
What if I can’t afford the price to attend the conference?
Save Our Sons is heavily discounting admission prices. We recommend everyone to register for the early bird special to maximise the discount.
When do the early bird prices end?
Sunday 7th July, 2024
What if I’ve missed out on the early bird prices and still can’t afford to attend?
- NDIS has an option for education out of your package. Check with your NDIS coordinator who should be able to assist you.
- Email the Save Our Sons team to discuss further info@saveoursons.org.au
Can I get a refund if I change my mind or am unable to attend?
- Full refund before July 1st, 2024
- Other refunds may be considered. However, the circumstances will be reviewed and you will be notified after the event concludes.
Financial Assistance
Is there any financial assistance available?
- Yes. Save Our Sons has secured a 10% discount at the following hotels in Olympic Park, The Novotel, Ibis the Pullman, and Quest Apartments. Please mention "The Waterview" to receive your 10% accommodation discount.
- Save Our Sons is offering free accessible transport to and from the Waterview, from the above hotels.
- Save Our Sons is offering discounted early bird registrations that end 7th July 2024.
- When families are experiencing hardship, there will be an application process for additional accommodation assistance, please contact Save Our Sons at info@saveoursons.org.au if you require assistance.
- We encourage you to speak to your NDIS coordinator about the educational components of your package and the support you will require from a carer.
- This small pool of funds will be shared across the successful applicants and will be used to reduce the nightly accommodation cost at the nominated hotels*
What if I’ve missed out on the early bird prices and still can’t afford to attend?
- NDIS has an option for education out of your package. Check with your NDIS coordinator who should be able to assist you.
- Email the Save Our Sons team to discuss further info@saveoursons.org.au
How do I start the hardship application process?
Please contact the team at Save Our Sons Duchenne Foundation on (02) 9554 6111 or at info@saveoursons.org.au
Streaming/Recording
Is it available via livestream?
- There will be no livestreaming and we encourage everyone to attend. The peers networking and connections are extremely valuable.
Is it available on the website to watch?
- We will endeavour to provide segments of the conference in the future for those who are unable to attend. However, there are no guarantees.
Miscellaneous
What if I’m part of a business?
- We have opportunities for businesses to host a Stall. Please contact the team at Save Our Sons Duchenne Foundation on (02) 9554 6111 or at info@saveoursons.org.au
I have dietary requirements; can you accommodate them?
- We ask everybody to indicate their needs on the registration form. Where possible, the venue will try to accommodate.
If we get a question that is not answered in our FAQs, we will add it to the list. Keep an eye out for updates on our website and social media.
INTERNATIONAL speakers
Doctor Kan N. Hor
PAEDIATRIC CARDIOLOGIST
PAT FURLONG
Founding President and CEO of PPMD
Prof Anton Emmanuel
PROF OF NEURO -GASTROENTEROLOGY
Prof Ros Quinlivan
LEAD - ADULT NORTH STAR CLINICAL NETWORK
Dr. Natalie Truba
PSYCHIATRY AND BEHAVIOURAL HEALTH
NATIONAL speakers
Dr. Zoe Davidson
Dietitian
Dr. Michelle Lorentzos
Paediatric Neurologist
Prof Craig Munns
Endocrinologist
Prof Miranda Grounds
Senior Honorary Research Fellow
Dr. Nicole Sheers
Respiratory Physiotherapist
Dr. Lee Woods
Senior Research Fellow
Kate Carroll
Senior Clinician / Research Physiotherapist
Robin Forbes
Genetic Counsellor
Dr. Amanda Griffiths
Paediatric Respiratory & Sleep Physician
Peter Houweling
Senior Researcher
Prof Mark Cooper
Endocrinologist
Assoc Prof Peter Arthur
Scientist
Dr. Katrina Morris
Neurologist
Dr. Ian Woodcock
Paediatric Neurologist
Conference Draft Program
This is a provisional schedule and may be subject to change as details are finalised.
Pre-conference Materials
Video Resources
The following short video explainers will refresh our general understanding and terminology of genetics and the respiratory system. Our Presenters will not be explaining these basics.
You will maximize your participation during the conference if you have viewed and refreshed some terminology.
Remember these animations contain deficit medical language and median statistics, which are anticipated but not exactly predictable due to the wide heterogeneity in individual patients with Duchenne and Becker muscular dystrophy.
They feature almost none of the many skills and abilities that people with Duchenne will attain and retain.
DMD: The Pathogenic Gene of Duchenne Muscular Dystrophy
(3 Min)
Cough (3 Min)
C-PAP/BiPAP (3 Min)
TEXT RESOURCES
Glossary of Genetic & Genomic Terms
Did you know there are 4 conditions known as Dystrophinopathies :
- Duchenne muscular dystrophy (DMD)
- Becker muscular dystrophy (BMD)
- X-Linked Dilated Cardiomyopathy (XLDCM)
- Manifesting Carriers
Unofficially, we know that Carers (Family) are impacted emotionally socially, physically, economically and more.
Duchenne affects approximately 1: 5,000 live male births (LMB) and approx. 1: 50 million females. Becker affects 1: 18,000 male births. Duchenne is a rare genetic condition, and we learn many new medical and genomic terms as we grow in our understanding.
To help us all, particularly health consumers, the online NIH Talking Glossary will give you access to an easy-to-understand multimedia glossary of 250 terms in alphabetical order. Try it any time to aid your understanding.
Talking Glossary (Website Link)
Talking Glossary (PDF Version)
The Australian Clinical Trials Glossary (PDF Version)
Registration Costs
Early Bird Discounts vs. Standard Rates
Discounted Early Bird Prices Valid Until July 7th; Standard Pricing from July 8th
Conference Sponsorship Prospectus
Learn How You Can Make a Difference! Join Us in Supporting Our 2024 Conference
DATE: Monday, September 16th, and Tuesday, September 17th
VENUE : Waterview in Bicentennial Park, Sydney
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