Brittle Bone Society Conference Programme 2016

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Annual Family Conference

2016 Friday 12th AUGUST Sunday 14th AUGUST 2016 HILTON Hotel READING

Please don’t forget to use #BBS16 on Twitter, Facebook & Instagram!

WORKING WITH PEOPLE WHO LIVE WITH OSTEOGENESIS IMPERFECTA Registered Charity Nos. England and Wales 272100, Scotland SC010951

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2016 Annual Family Conference Welcome to the Hilton Hotel, Reading for our 2016 AGM. As ever trustees, staff and volunteers have worked hard to ensure it’s a great weekend.

We will present a range of speakers on various topics and will offer delegates the latest updates about Osteogenesis Imperfecta (OI). The business section of our AGM will take place on Saturday 13th August and we are very excited to unveil our latest film. We will be showcasing our kids talent show for our youngsters and get ready to enjoy our wonderful Gala Dinner. Don’t forget your chance to win some cracking prizes for our Lucky Dip Table Draw.

BBS are honoured to have our event opened by the Right Worshipful the Mayor of Reading Councillor Mohammed Ayub. We have secured leading NHS Healthcare Professionals across the field of OI and invited delegates from OIFE, the HPP Community and this year we will hear progress updates on the RUDY study and hear from our own members who participate in this study.

It’s important you are confident we provide the best possible care for your children and this year we are gaining feedback for our new Kids Club caring for youngsters aged 0-10.

Chairman Elaine Healey, Trustee Board, myself and staff from headquarters hope you have a happy and memorable experience and we aim to speak to as many of you as possible over this funpacked weekend.

Please remember to #BBS16 — throughout the weekend and visit our social media stand, we want your feedback so we can continue to build on developing the best possible conference programmes for you.

Chief Executive Brittle Bone Society are grateful to all our supporters, sponsors and funders and this year we gained grant funding pledged from Mereo Biopharma and from Alexion Pharmaceuticals helping cover the costs of our conference event.

Contents Local Information 3 Hospitals, taxis, pharmacies, supermarkets Friday 12th August

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AGM Agenda

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Saturday 13th August

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Cool Bones Agenda

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Sunday 14th August

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Speakers and Facilitators

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Lucky Prize Draw List

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Brittle Bone Society Staff Chief Executive Patricia Osborne Support & Development Officer Coreen Kelday Communications Officer Karl Henry Fundraising and Admin Assistant Marthe Handling

BBS Temporary Staff Events Assistant Rebecca Finan

Board of Trustees at

August 2016

Chairman Elaine Healey Vice-chair John Phillips Secretary Mirrick Koh Treasurer Robert Gordon Trustees: Professor Faisal Ahmed Professor Nick Bishop Helen Chappell Yvonne Grant Andy Mills Harry Venet

THANKS Volunteers David Queen Anna Williams Paul Connor We would like to thank all who have agreed to help with the Brittle Bone Society Conference over the entire weekend.

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Hospitals

Royal Berkshire Hospital Frimley Park Hospital 10 minute drive — 2.7 miles 37 minute drive — 20 miles London Road Portsmouth Road Craven Road Camberley Reading Surrey Berkshire GU16 7UJ RG1 5AN

Tel: 0118 3225111 Tel: 01276 604604

Transport N.B. If you require a wheelchair accessible taxi we advise that you book in advance.

Reading Taxi Tel: 0118 9561010

Berkshire Cars Tel: 0118 9500400

Top Cars Tel: 0118 9442222

Pharmacies Lloyds Pharmacy Opening Hours: 277 Basingstoke Road Mon to Fri: 08:30 — 18:30 Reading Sat: 09:00 — 14:00 Berkshire Sun: Closed RG2 0HY

Whitley Wood Pharmacy 534 Northumberland Avenue Reading Berkshire RG2 8NY

Opening Hours: Mon to Fri: 09:00 — 18:00 Sat: 09:00 — 17:30 Sun: Closed

Tel: 0118 9872238

Tel: 0118 9872023

9 minute drive — 2 miles

5 minute drive — 0.5 miles

Supermarkets Morrisons Opening Hours: Basingstoke Road Mon - Sat: 06:00 — 23:00 Reading Sun: 10:00 — 16:00 Berkshire RG2 0HB

Costcutter 39 Berkeley Avenue Reading Berkshire RG1 6JS

6 minute drive — 1 mile

6 minute drive — 1.4 miles

Find the BBS at:

Opening Hours: Mon - Sat: 06:30 — 22:00 Sat: 07:00 — 22:00 Sun: 07:30 — 22:00

BBS Staff

bbs@brittlebone.org www.brittlebone.org @BrittleBoneUK

Brittle Bone Society Brittle Bone Society Brittle Bone UK

Coreen Kelday Karl Henry Support Development Communications Officer Officer

Marthe Handling Fundraising & Admin Assistant

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Brittle Bone Society Annual Conference 2016 Friday 12th August Time Event

Room

15:00 — 19:45

Outside Windsor Foyer

Registration and Information Desk

Provide permissions for photographs/filming and any other requirements

18:30 — 20:00

Buffet Dinner

20:00 — 20:45

BBS — Back to the future?

Windsor Suite Professor Nick Bishop

21:00 — 22:00

Pub Quiz

Windsor Foyer

Windsor Suite

Saturday 13th August AGM 14:00 — 15:15

Windsor Suite Agenda 1.

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5.

6.

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Welcome from Elaine Healey Chairman Minutes of AGM held on Saturday 12th September 2015 Matters arising Annual reports Chairman and CEO Audited Accounts to 31st March 2016 Treasurer Resolutions and Executive Committee Any other Competent Business

BBS Trustee Board

Elaine Healey Chairman

John Phillips Robert Gordon Mirrick Koh Vice-Chairman Treasurer Secretary

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Harry Venet

Prof Nick Bishop Prof Faisal Ahmed

Yvonne Grant

Andy Mills

Helen Chappell

Brittle Bone Society Annual Conference 2016 Saturday 13th August Time Event

Room

09:00 — 18:00 Registration & Information Desk Outside Windsor Foyer

09:00 — 12:45 and 14:00 — 16:00 Kids Club (0 - 10 years)

Abbey & Simonds

09:00 — 12:45 and 14:00 — 16:00 Cool Bones (11 - 15 years)

Kennet & Sutton

Remember to register your children to take part in the BBS Talent Show when signing into the Kids Club

Time

Event 09:30 — 09:35 Opening Remarks

Speaker Patricia Osborne (CEO) Elaine Healey (Chair)

Room

09:35 — 09:45 Welcome Address

The Right Worshipful the Mayor of Reading Councillor Mohammed Ayub

Windsor Suite

09:45 — 10:15 Paediatric Health Dr Raja Padidela

10:15 — 10:45 Paediatric Specialist Dentist Mrs Rebecca John 10:45 — 11:15 Coffee Break Windsor Foyer

11:15 — 11:45 EME Research Update Professor Stuart Ralston Windsor Suite 11:45 — 12:15 RUDY Study & Patient Dr Kassim Javaid

Panel Discussion

12:15 — 12:45 OI, HPP Rare Bone Dr Vrinda Saraff

Overview

12:45 — 14:00 Lunch Windsor Foyer 14:00 — 15:15 Annual General Meeting Executive Trustee Board

(See agenda previous page)

18:00 — 19:00 Kids Talent Show (0-15 years)

Windsor Suite

19:00 — 20:30 Gala Dinner Windsor Suite

19:00 Delegates to be seated for dinner (Please be prompt) 20:30 Charity Welcome Patricia Osborne (CEO)

Guest Presenter Paul Noble MBE

20:45 — 21:15 BBS Award Ceremony BBS Trustee Board & VIP’s 21:15 — 21:30 Prize Draw Each table will win a prize

(Members asked to make a donation) 21:30 — late Disco

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Brittle Bone Society Annual Conference 2016 Sponsored by

Cool Bones Agenda Saturday 13th August Jack Binstead Actor & Comedian

Time Event 09:00 — 09:30

Speaker/Facilitator Room

Delegate Registration

Kennet & Sutton

09:30 — 09:45 Inspiration/motivational Jack Binstead

Shared experiences

09:45 — 10:30 Flight Simulator Paul Connor

10:30 — 11:00 Juice Break 11:00 — 12:30

The Apprentice Zing Events Chocolate Challenge!

12:30 — 14:00 Lunch Windsor Foyer

14:00 — 15:30 The Apprentice Zing Events Kennet & Sutton

Chocolate Challenge!

Sunday 14th August Time

Event

Speaker/Facilitator Room

09:00 — 14:00 Registration and Information Desk

Outside Windsor Foyer

09:30 — 12:30

Abbey & Simonds

Kids Club (0 — 10 years)

09:30 — 12:30 Sports Taster Session Darren Rees Kennet & Sutton

Time

Speaker/Facilitator Room

Alison Wisbeach Tim Adlam

10:00 — 11:30 Adults & OI

11:30 — 12:00 Padrinos Flying Doctors

Dr Richard Keen Dr Malachi McKenna Maria Barbero

12:00 — 12:20 Closing Remarks

Patricia Osborne (CEO) Elaine Healey (Chair)

12:30—14:00

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Event

09:30 — 10:00 Designability

Lunch

Windsor Suite

Windsor Foyer

Speakers and Facilitators

Brittle Bone Society Conference 2016

Professor Nick Bishop Professor of Paediatric Bone Disease Sheffield Children’s Hospital

Dr Malachi McKenna Consultant

Department of Endocrinology &

Diabetes Mellitus

St. Vincent’s Hospital

Mrs Rebecca John

Consultant Senior Teaching Fellow in Paediatric Dentistry University of Bristol

Maria Barbero Padrinos — Flying Doctors Project OI Spanish Society

Dr Raja Padidela

Consultant Paediatric Endocrinology

Royal Manchester Children’s Hospital

Professor Stuart Ralston

Arthritis Research Council Chair of

Rheumatology and Head of the

School of Molecular and Clinical Medicine

University of Edinburgh

Tim Adlam

Head of Mechanical Engineering Designability

Paul Noble MBE

Swimmer in 5 Paralympic Games,

Swimming Commentator and Accountant

Dr Kassim Javaid Associate Professor Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences

Dr Richard Keen

Consultant Rheumatologist and

Honorary Senior Lecturer in

Metabolic Bone Disease & Director of

the Metabolic Bone Disease Unit

Royal National Orthopaedic Hospital

Darren Rees Disability and Multi Sports Coach

Film Unit Credits

Dr Vrinda Saraff

Department of Endocrinology and Diabetes

Birmingham Children’s Hospital

(Joined by Ms Alison Wisbeach Occupational Therapist)

Ben Wiles Director Ben Shelley Co-Director Marc Lambert Clark Cameraman Karl Henry Technical Support

Don’t forget to...#BBS16 Visit our Social Media Corner which will be open Friday from 3pm and during all breaks throughout the weekend. You’ll get to see all our latest films, leave a video message and even snap of a selfie! When there why not vote for your favourite new BBS T-shirt Design.

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Brittle Bone Society would like to thank the following for their generous support and donations.

Lucky Prize Draw MacKay’s Jam Hamper Wishbone Wine & After Dinner Mints £100 Slaters Gift Voucher BBS Teddy Bear Masterchef Finalist Adam Handling’s Cook Book £200 Brittany Ferries Voucher Signed Pictures from Brian Cox & Maggie Smith Tom Tom £100 worth of Delta Force Paintball Vouchers — UK wide Filofax Family Day Admission to Scottish Seabird Centre Hello! Magazine Subscription 4 tickets to LEGOLAND Manchester £25 Next Gift Voucher Family return Eurostar tickets ‘Really Good’ Gift Sets Disney Goody Bags Beano Backpack Goody Bag 2x Cineworld Tickets

Brittle Bone Society are grateful to all our sponsors and funders

Please don’t forget to use #BBS16 on Twitter, Facebook & Instagram!

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Brittle Bone Society, Grant-Paterson House, 30 Guthrie Street, Dundee, DD1 5BS Tel: 01382 204446 Fax: 01382 206771

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Registered Charity Nos. England and Wales 272100, Scotland SC010951