EDUCATION PROGRAM - ADULT
Please note all times are subject to change.
FRIDAY 28 FEBRUARY
| TIME | SESSION | |
8:30 - 10:00AM | REGISTRATION & MORNING TEA | |
| | RESEARCH AND SCIENCE | |
| 10:00 - 10:15AM | Drago Bratkovic | Welcome and opening address MPS and ML introduction |
| 10:15 - 10:45AM | Drago Bratkovic | Research update – trials and combination therapies |
| 11:00 - 11:25AM | Drago Bratkovic | MPS
III – Gene therapy |
| 11:25 - 11:50AM | Kim Hemsley | Is the retina a window to the brain? |
| 11:50 -12:10PM | Carolyn Ellaway | LSDP medicines review update |
| 12:10 - 12:20PM | Panel for questions | |
| 12:20 - 1:20PM | LUNCH | |
| MANAGING SYMPTOMS | ||
| 1:20 - 2:30PM | Anita Inwood Sephanie Oates Carla Rogers Plus available doctors | Syndrome workshops |
| 2:30 - 2:50PM | Nicole Williams | Orthopaedic surgery - risk benefits and quality of life |
| 2:50 - 3:20PM | Jim McGill | Respiratory
and heart disease |
| 3:20 - 4:00PM | Carla Rogers | NDIS part 1-facilitated workshop: - self-managing your plan - writing a family impact statement - NDIS advocacy and planning meetings |
| 4:00 - 4:20PM | Stephanie Oates | Clinical care and coordinating specialists |
| 4:20 - 4:30PM | Jimmy Webber | Family story - Work/Life and ERT patient perspectives |
| 4:30 - 4:40PM | Anita Inwood | Closing summary |
| 4:45 - 5:00PM | Reflection ceremony | |
| 6:00 - 8:00PM | WELCOME RECEPTION | |
SATURDAY 29 FEBRUARY
| TIME | SESSION | |
| Adult Program - MPS/ML EXPERIENCE | ||
| 09:00 - 09:30AM | DPM - Hala Abokamil | Supporting family wellbeing |
| 09:30 - 09:40AM | Jamie Campbell | Family story grief loss and hope |
| 09:40 - 10:00AM | Janice Fletcher | New Born Screening |
| 10:00 - 10:30AM | Martin Delatycki | Carrier Testing |
| 10:30 - 11:00AM | Kaustuv Bhattacharya | Non Genetic Drug treatments |
| 11:00 - 11:15AM | BREAK | |
| 11:00 - 11:15AM | Kim Hemsley | Brain in a dish study |
| 11:15 - 11:45AM | Kaustuv Bhattacharya | Transition and Adult experience Q&A |
| 11:45 - 12:00PM | Heather Anderson | Presentation from MPS - Adult participants NDIS story |
| 12:00 - 1:00PM | Kimberlee Murdoch | NDIS Part 2 - Workshop - Using capacity building language to get the best plan - How to maximise your NDIS Plan |
| 1:00 - 1:15PM | Vanessa Ede-Scott | Closing statement |
| 1:15 - 2:15PM | LUNCH | |
| 2:30 - 3:30PM | Natalie Oliveri | Family music therapy |
| 6:30 - 10:30PM | ADULTS GALA DINNER - CELEBRATE RARE DISEASE DAY | |
SUNDAY 1 MARCH
| TIME | SESSION | |
9:30 - 10:30AM | WALK/RIDE WITH HOPE FUNDRAISER | |
Level 8, 50 Margaret Street, Sydney NSW 2000 Australia |