MPSAUSTRALIA. Christchurch, New Zealand, November 2008 LYSOSOMAL DISEASES CONFERENCE AND THE 12TH NATIONAL AUSTRALIAN MPS SOCIETY CONFERENCE

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1 MPSAUSTRALIA Christchurch, New Zealand, November 2008 CELEBRATING THE 25TH JUBILEE OF THE AUSTRALIAN MPS SOCIETY. PROUDLY HOSTED BY LYSOSOMAL DISEASES NEW ZEALAND.

2 Program at a Glance Thursday 20th November 4:00pm - 5:30pm Registrations 6:00pm - 6:45pm Formal Cultural Welcome and Opening Address 6:45pm - 8:00pm Welcome Cocktails Friday 21st November 7:00am - 8:15am Registrations 8:30am - 10:15am Overview of LSDs looking back, looking forward Challenges of LSDs - The Brain, Central Nervous system 10:15am - 10:45am Morning Tea 10:45am - 12:30pm Therapies for the Brain 12:30pm - 1:30pm Lunch Break 1:30pm - 3:30pm Planned Clinical Trials of ERT 3:30pm - 4:00pm Afternoon Tea 4:00pm - 5:20pm Therapies Existing and Emerging 5:20pm Close of day Families on their own Saturday 22nd November 8:30am - 10:15am Clinical Management of MPS and other LSDs 10:15am - 10:45am Morning Tea 10:45am - 12:30pm Clinical Management (Continued) 12:30pm - 1:30pm Lunch 1:30pm - 3:00pm Workshops New Family Workshops All you need to know Existing and Emerging Therapies MPSI, MPSII, MPVI, Morquio, A. Mann, Pompe CNS Involvement/Management The Blood Brain Barrier Drug Management for Behaviour Sleep Management Gaucher Workshop Run by Genzyme Morquio TBD 3:00pm - 3:30pm Afternoon Tea 3:00pm - 5:00pm Workshops continued Clinical Management TBD Morquio Workshop continued Affected Adults Fabry/Pompe MPS6 Managing the effects of LSDs in Adults. 5:00pm Close of Day 7:00pm - 11:00pm Gala Dinner Sunday 23rd November 9:00am - 10:30am New Born Screening 10:30am - 11:00am Morning Tea 11:00am - 12:15pm Access to Medicines 12:15pm - 12:30pm Close of Conference 12:30pm - 1:30pm Combined Family Professional Lunch Restaurants and Shops The Parkview restaurant and cafe/bar, the Arjee Bhajee Indian Dine in and take-away, The Thai Orchard restaurant, Trevinos Restaurant and the Piranha cafe/restaurant bar are all at the park end of Riccarton Rd, within 400 meters of the Chateau on the Park. Further up Riccarton Road, within 800m of the hotel, are a large number of the eateries of all sorts, including fine dining at Rotherhams, McDonalds, KFC, Indian, Korean, Chinese, Malay, Lebanese, Or take a stroll across Hagley Park into town coming to the Art Centre with The Annie s Cafe and all sorts of food stands. There are a lot of restaurants in this area including one in the Art Gallery. It is only a few more minutes walk to the centre of town, and only about min from the hotel. Please ask at reception for a map to direct you to all these wonderful eateries. Accommodation Chatau on the Park 189 Deans Avenue Christchurch New Zealand Chatau on the Park Reservation: Australia New Zealand Hotel Website The Chateau on the park is A Unique Escape - Nestled in 5 acres of beautiful and tranquil gardens, the 193 room Chateau on the Park seems a world away from the stresses of city life. Yet just minutes from this secluded retreat is the sparkling city of Christchurch New Zealand. DINING: The Chateau on the Park Hotel offers one restaurant and the cosy Den Bar. The restaurant is open for breakfast, morning and afternoon teas, weekend brunch, weekday business lunches and dinner. Conference breakfast costs $17.00 per adult and $8.00 per child. To Book your accommodation: Please use the enclosed form and fax to the Hotel, or send back with your conference registration fees and forms. You will receive confirmation of your booking. Rooms at the Chateau are $165.00NZ per night. Hotel Reservations close 30th September Alternative Accommodation The Towers on the Park Cnr Deans Avenue and Kilmarnock Street Christchurch, 8011 New Zealand The Towers on the Park Reservation: Phone Fax We have chosen this option for large family groups and is just across the road from the Chateau on the Park Hotel. Centrally located on the border of beautiful Hagley Park, The Towers on the Park offers fantastic facilities and a variety of stylish rooms. The Towers on the Park is located in the heart of Christchurch, just strolling distance from the city s entertainment and shopping hub. The Towers on the Park has a range of recently refurbished accommodation options. There are 34 elegant rooms including modern studios, triple rooms, family units, executive suites and spacious spa bath units. All guests have access to the on-site gymnasium free of charge. The following options are blocked out in the name of Lysosomal Diseases New Zealand. Please call the above phone numbers to make your booking giving the hotel all your details. 2 Family units NZ $227.00, sleeps up to 5 people 4 Executives suites with studio NZ $268.00, sleeps up to 6 people. Location and Activities Located on the east coast of the South Island, Christchurch - just like the rest of New Zealand - is a city of contrasts. It is a place where its residents continue to enjoy a healthy, active lifestyle amidst a natural environment world-renowned for its beauty. A growing cosmopolitan ambience also adds a touch of excitement without overt flashiness. Everywhere there is an understated elegance that speaks of times gone by and promises a future where anything is possible. There are so many interesting things to do in and around Christchurch and something different to see and do within just 2 hours of Christchurch. Check out this website. Transportation to the Hotel There are a number to taxi companies at the airport with prices varying from $25 - $30. The trip to the hotel will take approximately 15 minutes. A Shuttle service is also available and must be pre booked. The link to pre book a shuttle is on the LDNZ website. It will take approximately 35 mins to get to the hotel. Wheelchair taxis are available and must be booked through LDNZ. Rental Cars: there are a number of rental car companies located in the airport. Please check this out on-line.

3 Lysosomal Diseases New Zealand and the Australian MPS Society are proud to bring to you our joint Conference on Lysosomal and Mucopolysaccharide Diseases The Conference will be held at the Chateau on the Park Christchurch, New Zealand, from 20th 23rd November The program has been designed to combine both Scientific and Family portions of conference allowing everyone to attend all sessions. On the evening of 20th November there will be a welcome reception and the commencement of registrations. A gala dinner and cultural experience will be held on 22nd November. An exciting and entertaining children s program has been developed that will cater to all ages and abilities. On the evening of 22nd November children 10 years and up will be going to the movies while the younger children will be entertained by a magician. Please return your registration forms and payment to the address below no later than 1st October 2008 for early bird registrations. Family and Professional Registration Form First Adult Second Adult Organisation Address Secretary, Lysosomal Diseases New Zealand 16 Woodleigh Place, Ohauiti, Tauranga New Zealand 3112 Telephone Is there any other information we should know about? Childrens/Affected Adults Details Surname First Name Diagnosis (if any) Age Family Registration Costs Cost Number Total Family Registration (Before 1st October) $200.00NZ $ NZ Late Family Registration $250.00NZ $ NZ Affected Children/ Adults FREE Sibling Registration $75.00NZ $ NZ Late Sibling Registration $100.00NZ $ NZ Total Payable $ Professional Registration Costs Cost Number Total Professional (Before 1st October) $400.00NZ $ NZ Late Professional Registration $500.00NZ $ NZ Day Delegate $150.00NZ $ NZ Students $120.00NZ $ NZ Not For Profits $150.00NZ $ NZ Total Payable $ NZ Day Delegate Attendances/ Accompanying Persons please indicate which functions you will be attending. Friday Saturday Sunday Dinner Saturday Evening $ Please advise of any special dietary requirements:

4 Additional Information for Children Attending the Children s Activities Please fill out one form per child Family Name First Name Lysosomal/MPS Disease Age Parents Name Mobile Please complete the following questions: Does your child have an intellectual disability? No Mild Moderate Severe Does your child have a physical disability? No Mild Moderate Severe : Is your child toilet trained? Yes Needs assistance Incontinent Does your child have mobility problems? No Walks with Assistance Stroller Wheelchair Does your child have behavioural problems? No Hyperactive Other Does your child have special dietary needs or specific difficulties with eating? No Soft foods only Puree foods Needs help Needs feeding Prone to choking What medications does your child take? Are you bringing your own carer? No Yes If yes what is the Name of your carer? Will your carer be sharing your accommodation? No Requires separate accommodation If yes, please complete an accommodation form for your carer. (This will be an additional charge). If you are not bringing a carer, please indicate the days you require a carer for your child. Friday 21st November Saturday 22nd November Saturday 22nd (Evening- 6:30pm-11:00pm) Sunday 23rd November What is your childs normal bedtime and bedtime routine? Is there any other information we should know about? Please Note: All costs are in New Zealand Dollars and are per person. Cheques or bank cheques should be made out to Lysosomal Diseases New Zealand. Please post registration documents and fees to 16 Woodleigh Place, Ohauiti, Tauranga, New Zealand 3112.

5 Hotel Registration Information Chateau On The Park, Christchurch Abacus Chateau Pty Limited ACN FORM FOR ference Reservation Request Form for LDNZ Australasian Conference, Thursday 20 November - Sunday 23 November Please forward this reservation form direct to the Chateau On The Park Reservations Manager, in order to secure your accommodation for the Lysosomal Diseases New Zealand Australasian Conference. Name: Address: Telephone: Fax: Date of Arrival: E.T.A: Departure: No of Adults Occupying Room: No. of Children Under 12yrs Occupying Room: Special Requirements: Accommodation: Double Twin share Single Triple Shower chair Please guarantee my booking with the credit card number listed below: Card type: Amex Diners Mastercard Visa JCB Card Number: Expiry date: Signature: NB: We note that all charges will be settled on checkout. Conference Accommodation Information Check-in time at the hotel is 1300h and check-out time is 10.30am. We are unable to guarantee access to guest rooms outside these times, however we will endeavour to meet any early check-in and late check-out requests as required. (Please note that there may be a late departure fee for check-outs after 10.30am). In the event that you no longer require your accommodation, please contact the hotel immediately to avoid any possible cancellation fees. If this reservation no shows on the arrival date given above, one night s accommodation will be payable as a no-show fee. Once a booking no-shows, the whole booking is automatically cancelled and any further accommodation requirements will be on a space availability basis only. This form is to be returned to the hotel no later than 30 September 2008 to guarantee availability and to qualify for the special room and discounted breakfast rates as follows: NZ$ including GST per room per night for single/double adult occupancy. Child under 12 no charge. (Maximum 2 adults & 2 children per room.) NZ$ including GST per night for a triple room three adults. NZ$17.00 per adult for a fully cooked buffet breakfast served in the garden court brasserie. Children NZ$8.50 per child The Chateau On The Park, PO Box 8161, Riccarton, Christchurch Fax: Freephone: res@chateau-park.co.nz