We welcome you to join us as we celebrate our 15th National Conference. The line up for the weekend will provide the latest information in clinical management and treatment, research and most importantly opportunities to network with experts in the MPS community, including clinicians, scientists, health care professionals and researchers. As well as professional presentations there will be a variety of talks reﬂecting personal experiences, workshops and opportunities for participants to reﬂect and share knowledge in a casual and supportive environment. The venue may have changed but Sea World Resort is sure to offer a fun and interactive conference for everyone. We look forward to seeing you there!
Vanessa Ede-Scott Operations Manager
Sea World Resort is located on the Broadwater Gold Coast and offers comfortable family style accomodation and modern conference rooms with free wiﬁ. Residential delegates have access to amazing theme park discounts as well. The new resort lobby is spacious and will provide us plenty of space for informal catch ups.
Sea World Dr, Main Beach, Gold Coast, Queensland 4217 Australia
Rooms are available with walk in and separate showers, these will be given as a priority to those with mobility needs. These rooms are large and have a separate bedroom. Family rooms and interconnecting rooms are also available, please note these rooms have a shower over the bath. • You are able to stay at the venue 3 days before and 3 days after the conference at the discounted corporate rate. These additional nights are to be paid direct to the hotel on arrival. Please indicate if you are taking up this offer on your registration form so the room can be held for you. Please note you are responsible for all room charges.
Children with MPS and Related Diseases and their siblings will have their own supervised program. A visit to Sea World, fun characters dancing and more. Please let us know if you already have an annual Sea World pass. Those with complex needs will have a modiﬁed program. Evening activities will be available for subject to carers and volunteers • We expect some families will bring their own carers as this is often the best solution however we welcome new volunteers as well. If you are bringing a carer a Blue Card (QLD working with Children check) is necessary so please let us know so we can help you arrange this. Forms are available to download https://www.bluecard.qld.gov.au/applications/applications It takes 28 days for you card to come please apply ASAP, there is no fee. • If you or your child has complex care needs please get in touch to discuss needs and resources required.
Dr Jim McGill , Dr David Ketteridge, Dr Kim Hemsley's Adelaide team and Anita Inwood are working closely with the Society to provide informative speakers
Thank you to our Sponsors and donors who support our education program
For more information please see our information and registration pack (PDF)
MPS Update by Prof Frits Wijburg
MPS & planning for the NDIS Q&A
Date: Monday 31 October 2016
Venue: Conference Room 6, Level 2, Sydney Children's Hospital, High St, Randwick
SPEAKER -Prof Frits Wijburg, Academic Medical Center, Amsterdam. CHAIR –DrCarolyn Ellaway
Prof Wijburgchairs the department of pediatric metabolic diseases at the Academic Medical Center (AMC) in Amsterdam. He has long-standing experience in the diagnosis, management, and therapy of patients with inherited metabolic diseases with a focus on lysosomal storage disorders.
Melbourne’s home of Motown , Soul & Northern Soul
Saturday 14th May 2016
Join us for a fun night for all adults. All money raised will be donated to the MPS & Related Diseases Society.
Melbourne’s home of Motown and Northern Soul is a monthly event attended and DJ’s by Andrew James. Andy has two boys affected with MPS IIIA and this fundraiser is to support MPS & Related Diseases Awareness Day.
Please bring your friends and come along. What a great way to catch up with everyone. There will be lots of prizes, raffles & MPS merchandise, along with finger food and great music.
So wear your dancing shoes!
Drinks at bar prices
MPS EVENT: SATURDAY 14TH MAY
PRICE: $5 ENTRY
WHERE: BAYSWATER LAWN BOWLS CLUB
43 PHYLLIS STREET
Camp Manyung Mt Eliza Victoria, 9-12 April 2015
Enquiries: 1800 045 515
Make one time online payment via Paypal
Credit Card or Paypal acccepted. No Paypal account required for Credit Card.
Please join the Australian MPS Society to launch ‘Kaitie the Courageous’ a book that tells the story of brave nine year old South Australian girl, Kaitie, who is living with Mucopolysaccharidosis type 1 - Hurler syndrome (MPS1H).
MPS is a very rare and debilitating genetic disorder, but one that is potentially fatal. Kaitie’s story spotlights the experiences of Australian families impacted by MPS and the challenges and inspiration for those with rare diseases to live life to the full.
To launch ‘Kaitie the Courageous’ you will hear from Kaitie’s mother, Kimberlee Francis, as well as experts in MPS.
Date: Wednesday May 7, 2014
Time: 10:30am for presentations and morning tea
Location: The Women’s and Children’s Hospital in Adelaide
RSVP: 5 May, 2014.
Contact: Rachel Stanton,
02 8281 3268