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Welcome to our 9th National MPS Conference Canberra 2002

Housekeeping. Important notices for delegates p. 5Mobile phones switched offPayment of accountsNo children or babies in conference roomsCoded name tagsConference program p. 7Children's program p. 12Conference Signage Airport transfers. Conference Program Friday. 9.00am ? 5.00pm HotelTheme

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Welcome to our 9th National MPS Conference Canberra 2002

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    1. Welcome to our 9th National MPS Conference Canberra 2002

    2. Housekeeping Important notices for delegates p. 5 Mobile phones switched off Payment of accounts No children or babies in conference rooms Coded name tags Conference program p. 7 Children’s program p. 12 Conference Signage Airport transfers

    3. Conference Program Friday 9.00am – 5.00pm Hotel Theme “Sharing our story” Research updates Workshop 5.00pm Visiting celebrities ACT Brumbies 7.00pm – 11.00pm Night tour of Canberra & Kamberra Wine Complex

    4. Conference Program Saturday Theme “Medical Matters” Combined BBQ at Lake Tuggeranong Professional workshop – non-family delegates AGM – important elections for COM Formal dinner - presentations to speakers, sponsors and supporters

    5. Conference Program Sunday Memorial Service 8.30am – 9.00am Children depart hotel earlier at 8.30am Theme “Quality of Life” Workshop Combined lunch adults, children and carers Presentations to carers Conference close 2.00pm

    6. Children’s program Care arrangements Return to hotel by 5.00pm today and tomorrow Crèche – see children anytime throughout day Change over assistance available between 5.00pm and 6.30pm today and tomorrow Evening activities / babysitting in own room 6.30pm – 11.00pm NOTE: TV/Video available in the crèche

    7. Other bits and pieces MPS Family Cook Book on sale Launch of our Anaesthetic booklet tomorrow Logo items Surprises

    8. Conference theme Sharing our story

    9. Our story

    10. The story of the MPS Society in Australia

    11. The beginning

    12. 1983 Just about 19 years ago a mother in Tasmania, Donna Bryan, was desperately seeking someone who would know and understand what she and her husband were going through at the devastating diagnosis of Hurler syndrome for their beautiful daughter Rebecca. She wrote a letter to the Australian Women’s Weekly and received many responses. From this small cry for help began our Society.

    13. 1983 - The Society for Mucopolysaccharide Diseases – Australian Branch - was formed Inaugural meeting 19 November 1983 We established strong contact with English MPS Society

    14. 1984 June, 1984 – Committee formalised Ros Smith (President), Helen Coppock (Secretary), Diane Hawkins (Treasurer), Amanda O’Reilly, Gwen Griffiths (Committee members) First Australian MPS logo – hands of an MPS child together with outline of Australia and boomerang

    15. 1985 – Could we run a national conference?? Yes, in Albury New South Wales With encouragement & support of Dr John Rogers, Dr Ed Wraith & Margaret Sahhar (all of Victoria) Many families attended from as far away at WA

    16. Comments from inaugural conference Such a well-planned conference especially where children were concerned It is good to have the company of others who know and feel what we feel The association of other families in similar circumstances has been of great emotional benefit to us all. I have learnt a lot from it .. Many friendships have been made this weekend

    17. Establishment phase

    18. More conferences 2nd 1987 Lake Munmorah 3rd 1989 Valla Beach Tax deductibility 1988 Fundraising – local groups 1989 First International Congress on MPS & Related Disorders in Minneapolis 1989 first BMT in Australia in Sydney Newsletter Partnerships with professionals and overseas societies

    19. Expansion

    20. 1989 – New committee Denise Law (President), Sylvia Webb (Secretary), Isabel Glasson (Treasurer) Increase in membership, computer technology, newsletter revamped to Linking Hands across Australia, information booklets produced in UK available to us in Australia 1994 National Office – Ros McDonald as Office Manager 1994 – inaugural training weekend for Area Reps 1995 Company Limited by Guarantee – new name, new structure

    21. Consolidation More conferences 1993 – Albury (Sylvia Webb) 1996 combined with International symposium 1998 Ballarat VIC (Victorian committee) Growing numbers Drive for sponsorship – newsletter sponsorship Regular group of supporters in Sydney - fundraising Publication of Australian booklets MPS III booklet and MPS I booklet

    22. International scene 1990 2nd International Symposium – Manchester - isolation of Hunter gene – presentation by John Hopwood 1993 3rd International Symposium - Germany

    23. International recognition 1996 Hosting 4th International Symposium in Wollongong Australia The power of the story – adults with MPS, family members sharing their story Merging family and professional conference 500+ participants

    24. Review and consolidation

    25. 1998 New committee with Teresa Llewellyn-Evans (President), David Oliver (Secretary), Isabel Glasson (Treasurer), Patricia Morgan and others

    26. Mission Statement To value, nurture and support those affected directly or indirectly with Mucopolysaccharide and related diseases

    27. Aims Acts as a support group for its members through the provision of local family support networks, publication of quarterly newsletters, holding of biennial national conferences and providing relevant information Promotes a partnership between families and professionals, both local and international Promotes community awareness of MPS and its impact on families and carers

    28. 2000 Conference – Coffs Harbour

    29. New Logo - 2000

    30. Adult MPS booklet

    31. www.mpssociety.org.au

    32. Other markers Changes in newsletter – newsletter editorial team MPS II booklet published Millenium bug – new technology Database overhaul Planning for brochures and other publications Fostering partnerships with New Zealand Increased national focus

    33. Focus on inclusion Greater focus on other family members Lysosomal Diseases Australia (1998) 1998 - 4th International Symposium in Vienna 2000 - 5th International Symposium in Minneapolis

    34. 9th National MPS Conference Our story Sharing our story

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