The Gathering Annual Conference 2019 13Th

Total Page:16

File Type:pdf, Size:1020Kb

The Gathering Annual Conference 2019 13Th Brittle Bone Society Supporting people who live with Osteogenesis Imperfecta The Gathering Brittle Bone Society Annual Conference 2019 13th - 15th September - The Wokefield Estate, Reading, RG7 3AE Friday 13th September 15.00 Registration desk opens 20.30 VIP Guest Spot Barry Simmons, TV Celebrity, Professional Quizzer 18.30 Welcome Address Chairman Elaine Healey & CEO Patricia Osborne 20.45 BBS Battle of the Eggheads Buffet Dinner As seen on TV Saturday 14th September 11.30 #RealLifeStories 9.00 Opening remarks & Civic welcome Lord Kevin Shinkwin & Abi Brown, Chairman Elaine Healey & CEO Patricia Osborne, Shani Dhanda & Gem Turner Councillor Graham Pask (Chairman of West Berkshire Council) 12.30 Mental Health Dr. Megan Riddington, Great Ormond Street Hospital 9.15 Collaboration: working together (GOSH), London BBS, OIFE, XLH Network, Softbones, FDSSUK, RGA Osteogenesis Imperfecta, X-linked Hypophosphotemia, 13.00 Lunch Hypophosphatasia, Fibrous Displaysia, Achondroplasia 14.00 AGM 9.35 Access to medicine: what is it and why 15.00 does it matter? Sleep & Fatigue Paul Connor, Market Access Director & BBS Supporter Dr. Catherine DeVile (GOSH) and Dr. Juddith Bubbear, Royal National Orthopaedic Hospital, London 9.50 ERN's, BOND & RUDY Dr. Kassim Javaid, Oxford University Hospital 15.40 ASTEROID Update Dr Judith Bubbear, Royal National Orthopaedic Hospital 10.20 TOPaZ Update Prof. Stuart Ralston, Edinburgh Western General Hospital 16.00 Close 10.40 Managing Pain 18:15 Welcome Drinks Reception & Entertainment Prof. Stuart Ralston, Edinburgh Western General Hospital 19.00 Gala Dinner & Awards 11.05 Coffee Break Vice Chairman John Phillips & CEO Patricia Osborne 22.00 Disco Sunday 15th September 9.30 Activity Graffiti Wall - Family Fun for all ages! 10.45 Workshops & Updates Welfare PIP consultation results & what next? Saturday 14th September Healthcare BBS consultation and updates on adult services, 10.00 - Sleep & Fatigue clinical care guidelines, registries and research Activity & Exercise Saturday 14th 12.45 Closing Remarks Sunday 15th September 9.00 Creche opens 13.00 9.30 - Laser Tag Lunch 16.00 Creche closes Conference 2019 is proudly sponsored by Registered Charity Nos. England and Wales 272100, Scotland SC010951.
Recommended publications
  • Thames Valley Papists from Reformation to Emancipation 1534 - 1829
    Thames Valley Papists From Reformation to Emancipation 1534 - 1829 Tony Hadland Copyright © 1992 & 2004 by Tony Hadland All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form, or by any means – electronic, mechanical, photocopying, recording or otherwise – without prior permission in writing from the publisher and author. The moral right of Tony Hadland to be identified as author of this work has been asserted in accordance with the Copyright, Designs and Patents Act, 1988. British Library Cataloguing-in-Publication Data A catalogue for this book is available from the British Library. ISBN 0 9547547 0 0 First edition published as a hardback by Tony Hadland in 1992. This new edition published in soft cover in April 2004 by The Mapledurham 1997 Trust, Mapledurham HOUSE, Reading, RG4 7TR. Pre-press and design by Tony Hadland E-mail: [email protected] Printed by Antony Rowe Limited, 2 Whittle Drive, Highfield Industrial Estate, Eastbourne, East Sussex, BN23 6QT. E-mail: [email protected] While every effort has been made to ensure accuracy, neither the author nor the publisher can be held responsible for any loss or inconvenience arising from errors contained in this work. Feedback from readers on points of accuracy will be welcomed and should be e-mailed to [email protected] or mailed to the author via the publisher. Front cover: Mapledurham House, front elevation. Back cover: Mapledurham House, as seen from the Thames. A high gable end, clad in reflective oyster shells, indicated a safe house for Catholics.
    [Show full text]
  • Mortimer Heritage Trail
    Mortimer Heritage Trail Walk 2: Mortimer Common 3km (2.25 miles) This second of two moderate walks identifying interesting properties and places covers Mortimer Common, the newer part of the village, with homes being built mainly after 1880. Until then it had grown gorse and birch but not much else, the gravel soil being useless for agriculture. The Enclosure Acts from earlier that century had put the Common into private ownership. Housebuilding started slowly with existing ‘squatter’ cottages in Longmoor, Groves Corner and Summerlug being joined by a few more. West End House and Briar Lea House were the only sizeable properties by 1840. After land sales in 1870-71, house building started in earnest from about 1880 including in Windmill Road, Victoria Road and King Street (named after Mr King the baker), the population growing rapidly from the early 1900s. We start at the Community Centre car park, marked (1) on the red route on page 4, in the Fairground. The Fairground, is designated as an open space amenity. Today this is where travelling fairs and circuses come and village events are held. In the past, it has been used for gymkhanas, which have attracted Royal participants. Earlier still cattle and horse fairs were held there with animals being driven along Welshman’s Road allegedly from Wales but more likely from the railway sidings at Padworth. The Horse and Groom pub opposite would have been the oldest pub in the village had it remained in its original 17th century half-timbered building. The present pub was built adjacent, the original becoming a butcher’s shop.
    [Show full text]
  • Your Perfect Venue for a Stunning Celebration
    Magical weddings at Wokefield Park Your perfect venue for a stunning celebration Arriving up the sweeping driveway is the first of many unforgettable experiences. With its manicured lawns, gardens, picturesque lake and 250 acres of Royal Berkshire’s finest parkland, The Mansion House, Wokefield Park has a special air of romance and a magical sense of seclusion. For generations this has been the family Here, it’s the little details that make all the home of nobles, dignitaries and society’s difference and our experienced team will movers and shakers. As you step inside help plan everything to perfection. it still has that homely feel. The perfect Whether it’s your wedding reception, your backdrop for your wedding, the 18th ceremony or both, we’ll make sure your day century Mansion House offers much more is as individual, exciting and memorable as than breathtaking beauty and historic you have always dreamed. grandeur. Your big day You no doubt have your own ideas about your special day, from the classic and traditional to the creative and quirky. Or if you are looking for inspiration, we can provide plenty of suggestions. We believe no two weddings should ever be the same. Built in the early 1700s, The Mansion House was designed Outside, the stunning grounds make a beautiful setting with space and flexibility in mind. Today, retaining its for your photographs. While you capture the moment, original character and charm, we have a variety of we’ll host your drinks reception on the terrace and keep rooms to accommodate intimate gatherings and large the conversation flowing with tall Pimms, Bucks Fizz & celebrations for up to 350 people.
    [Show full text]
  • Minutes of the 93Rd Atomic Weapons
    OFFICIAL Minutes of the 93rd AWE Local Liaison Committee Meeting Wednesday 4th July 2018 AWE, Aldermaston Present: Haydn Clulow Director Site and Transformation AWE (Chair) Cllr Graham Bridgman West Berkshire Council Cllr Avril Burdett Tadley Town Council Cllr John Chapman Purley on Thames Parish Council Cllr Jonathan Chishick Tidmarsh with Sulham Parish Council Cllr Sophie Crawford Aldermaston Parish Cllr Debbie Fisher Wokefield Parish Council Cllr Roger Gardiner Basingstoke and Deane Borough Council Cllr David Leeks Tadley Town Council Cllr Clive Littlewood Holybrook Parish Council Cllr David Livingstone Silchester Parish Council Cllr Mollie Lock Stratfield Mortimer Parish Cllr Royce Longston Burghfield Parish Council Cllr George McGarvie Pamber Parish Council Cllr Ian Montgomery Shinfield Parish Council Jeff Moss Swallowfield Parish Council Cllr Ian Morrin West Berkshire Cllr Susan Mullan Tadley Town Council Amy Palmer West Berkshire Council Cllr Barrie Patman Wokingham Borough Council Cllr Jonathan Richards Basingstoke Council Carolyn Richardson West Berkshire Council Susie Tucker AWE Nick Bolton AWE Philippa Kent AWE John Steele AWE Gemma Wilson AWE Anna Markowska AWE Scott Davis-Hearn AWE Liz Pearce AWE Michele Maidment AWE Luke Joyner AWE Graduate Adam Karasinski AWE Graduate Regulators: Gary Cook Office for Nuclear Regulation Rob Greene Environment Agency Apologies Apologies had been received from Councillors Philip Bassil, Penee Chopping, Stuart Coker, Jan Gavin, Gerald Hale, John Miller, John Robertson, David Shirt, Richard Smith and Tim Whitaker 1 OFFICIAL Actions from previous meetings Action 2/90 John Steele to present on an updated AWE Travel Plan. We will be in a position to cover this at the next meeting, Action ongoing Approval of the 92nd Meeting minutes In respect to the minutes alluding to the planning status of Aldermaston Manor the amended wording adds accuracy.
    [Show full text]
  • Green Park Village Local Area Guide
    READING, BERKSHIRE LOCAL AREA GUIDE Reading 1 READING, BERKSHIRE Contents WELCOME TO Live Local 2–3 Green Park Village Parks & Days Out 4–5 Eating Out 6–7 A new lakeside village of New England inspired Health & Wellbeing 8–9 houses and apartments in Reading, Berkshire, Sports & Leisure 10–11 Green Park Village offers the chance to become part Retail Therapy 12–13 of a thriving new community. Arts & Culture 14–15 If you enjoy dining out there is a wide selection of Educational Facilities 16–17 bars, restaurants and cafés nearby. Green Park Village Better Connected 18–19 is also within easy reach of a good selection of entertainment and shopping amenities. Doctors & Hospitals 20 Within this guide we uncover some of the best places to eat, drink, shop, live and explore, all within close proximity of Green Park Village. 2 1 GREEN PARK VILLAGE LOCAL AREA GUIDE LAKES COFFEE POD NUFFIELD HEALTH The lake at Green Park Village 0.7 miles away READING FITNESS LIVE is a beautiful setting for your Coffee Pod café is open & WELLBEING GYM life outdoors with play and throughout the working day, 0.9 miles away offering tasty breakfasts and a picnic areas and viewing State-of-the-art facilities for great selection of lunches. platforms. In addition, everyone including a 20-metre Longwater Lake at Green 100 Brook Drive, Green Park, swimming pool, gymnasium, Local Park Village also offers rowing Reading RG2 6UG health and beauty spa, exercise and fishing opportunities. greenpark.co.uk classes and lounge bar. At Green Park Village enjoy effortless living with all the Permission will be required from the Business Park.
    [Show full text]
  • Local Wildife Sites West Berkshire - 2021
    LOCAL WILDIFE SITES WEST BERKSHIRE - 2021 This list includes Local Wildlife Sites. Please contact TVERC for information on: • site location and boundary • area (ha) • designation date • last survey date • site description • notable and protected habitats and species recorded on site Site Code Site Name District Parish SU27Y01 Dean Stubbing Copse West Berkshire Council Lambourn SU27Z01 Baydon Hole West Berkshire Council Lambourn SU27Z02 Thornslait Plantation West Berkshire Council Lambourn SU28V04 Old Warren incl. Warren Wood West Berkshire Council Lambourn SU36D01 Ladys Wood West Berkshire Council Hungerford SU36E01 Cake Wood West Berkshire Council Hungerford SU36H02 Kiln Copse West Berkshire Council Hungerford SU36H03 Elm Copse/High Tree Copse West Berkshire Council Hungerford SU36M01 Anville's Copse West Berkshire Council Hungerford SU36M02 Great Sadler's Copse West Berkshire Council Inkpen SU36M07 Totterdown Copse West Berkshire Council Inkpen SU36M09 The Fens/Finch's Copse West Berkshire Council Inkpen SU36M15 Craven Road Field West Berkshire Council Inkpen SU36P01 Denford Farm West Berkshire Council Hungerford SU36P02 Denford Gate West Berkshire Council Kintbury SU36P03 Hungerford Park Triangle West Berkshire Council Hungerford SU36P04.1 Oaken Copse (east) West Berkshire Council Kintbury SU36P04.2 Oaken Copse (west) West Berkshire Council Kintbury SU36Q01 Summer Hill West Berkshire Council Combe SU36Q03 Sugglestone Down West Berkshire Council Combe SU36Q07 Park Wood West Berkshire Council Combe SU36R01 Inkpen and Walbury Hills West
    [Show full text]
  • MVP Has a New Logo!
    Mortimer Village Partnership Newsletter October 2014 All this and more available on our website www.mortimervillage.org.uk MVP has a New Logo! Mortimer Village Partnership is delighted to announce the launch of our new logo which reflects the coming of age of the MVP, recognised by the Queen’s Award for Voluntary Service. MVP has now been existence for five years and this seems the right time to refresh our image. The new logo has been designed by Richard Crowther working with the MVP Committee and seeks to retain elements of the original logo, the winning design from a competition, reflecting still the familiar blue circle and taking the tree and people elements into a stylised graphic. It is hoped that the new logo, which now specifically shows “MVP”, as Mortimer Village Partnership has become known, will improve people's recognition of the many MVP activities and events throughout the year. The logo will be easier to reproduce and is scalable to create real impact when enlarged on posters and, unlike the current logo, it will benefit from not losing the key elements when reduced. We think the new strap line Enriching Village Life reflects the objectives of the MVP, not only in the activities directly run by MVP, but also through our support for the many clubs and organisations that contribute to vibrant village life. We hope that you will notice the new logo on many communications and of course in recognising all the different activities arranged by MVP, become interested in joining us to continue building our award-winning community.
    [Show full text]
  • Map Referred to in the West Berkshire (Electoral Changes) Order 2018 Sheet 1 of 1
    SHEET 1, MAP 1 West Berkshire Sheet 1: Map 1: iteration 1_IT Map referred to in the West Berkshire (Electoral Changes) Order 2018 Sheet 1 of 1 Boundary alignment and names shown on the mapping background may not be up to date. They may differ from the latest boundary information applied as part of this review. This map is based upon Ordnance Survey material with the permission of Ordnance Survey on behalf of the Keeper of Public Records © Crown copyright and database right. Unauthorised reproduction infringes Crown copyright and database right. The Local Government Boundary Commission for England GD100049926 2018. WEST ILSLEY CP FARNBOROUGH CP KEY TO PARISH WARDS EAST COLD ASH CP ILSLEY CP FAWLEY STREATLEY A COLD ASH CP CATMORE CP CP B FLORENCE GARDENS C LITTLE COPSE ALDWORTH D MANOR PARK & MANOR FIELDS CP BRIGHTWALTON COMPTON CP CP GREENHAM CP LAMBOURN E COMMON F SANDLEFORD LAMBOURN CP DOWNLANDS NEWBURY CP CHADDLEWORTH BASILDON CP BEEDON G CLAY HILL CP RIDGEWAY H EAST FIELDS BASILDON I SPEENHAMLAND PEASEMORE CP J WASH COMMON CP K WEST FIELDS EAST GARSTON CP THATCHAM CP L CENTRAL PURLEY ON HAMPSTEAD ASHAMPSTEAD M CROOKHAM NORREYS CP THAMES CP LECKHAMPSTEAD CP N NORTH EAST CP O WEST TILEHURST PANGBOURNE & PURLEY TILEHURST CP CP P CALCOT Q CENTRAL GREAT R NORTH YATTENDON R SHEFFORD CP CP PANGBOURNE TIDMARSH CP SULHAM CP CHIEVELEY CP FRILSHAM CP TILEHURST CP CHIEVELEY TILEHURST & COLD ASH BRADFIELD BIRCH HERMITAGE WINTERBOURNE CP CP CP COPSE WELFORD CP Q P BOXFORD STANFORD TILEHURST DINGLEY CP CP SOUTH & HOLYBROOK ENGLEFIELD HOLYBROOK CP
    [Show full text]
  • Burghfield & Mortimer Neighbourhood Action Group
    Location: Online (re COVID-19 Regs) Date: 09.06.21 Time: 19:00 Burghfield & Mortimer Neighbourhood Action Group Members Present: Debbie Fisher NAG Secretary/Wokefield Parish Council Graham Bridgman WBC – Burghfield and Mortimer Ward John Wells Stratfield Mortimer Parish Council Nick Carter NAG Vice Chairman/Stratfield Mortimer Parish Council Penee Chopping Ufton Nervet PC Mike Warner Padworth PC PC Robert Hubbard- Thames Valley Police Clark Apologies: Royce Longton NAG Chairman/WBC – Burghfield and Mortimer Ward V1.1 Page 1 of 7 Annual General Meeting 1. Welcome & Introductions Meeting opened 19:00. 2. Apologies for absence Apologies were noted. 3. Minutes of the previous annual general meeting Minutes of the meeting held on 23.09.20 were approved as correct. 4. Matters arising None. 5. Election of Chairman Graham Bridgman nominated Royce Longton as Chairman, Penee Chopping seconded. Royce Longton was duly elected as the Burghfield & Mortimer Neighbourhood Action Group Chairman. 6. Election of Vice-Chairman Graham Bridgman nominated Nick Carter as Vice-Chairman, Penee Chopping seconded. Nick Carter was duly elected as the Burghfield & Mortimer Neighbourhood Action Group Vice- Chairman. 7. Election of Secretary Graham Bridgman nominated Debbie Fisher as Secretary, Penee Chopping seconded. Debbie Fisher was duly elected as the Burghfield & Mortimer Neighbourhood Action Group Secretary. V1.1 Page 2 of 7 Meeting closed at 19:16. General Meeting 8. Welcome & Introductions Meeting opened 19:17. 9. Apologies for absence Apologies were noted. 10. Declaration of Interests None. 11. Minutes of the previous general meeting Minutes of the meeting held on 14.04.21 were approved as correct. 12.
    [Show full text]
  • Local Government Boundary Commission for England Proposals for West Berkshire Council Proposed Burghfield & Mortimer Ward
    Local Government Boundary Commission for England proposals for West Berkshire Council Proposed Burghfield & Mortimer Ward Introduction This response to the Local Government Boundary Commission for England proposals for the restructuring of the wards for West Berkshire Council is from both West Berkshire Council Members for the Burghfield Ward (Carol Jackson Doerge and Ian Morrin), one of the two Members for the Mortimer Ward (Graham Bridgman) and the single Member for the Sulhamstead Ward (Keith Chopping). All of us are members of the Conservative Group. These three wards are those that form an overlap with the Wokingham constituency (which remains unchanged in the final version of the Boundary Commission for England’s 2018 Review proposals): Burghfield (two members: Burghfield parish), Mortimer (two members: Beech Hill, Padworth, Stratfield Mortimer, Wokefield and Ufton Nervet parishes) and Sulhamstead (one member: Beenham, Englefield and Sulhamstead parishes). The proposals for changes to ward boundaries The final (revised) WBC submission to LGBCE was for a 42 member council including: a single member Mortimer Ward covering the Stratfield Mortimer parish alone, a two member Burghfield Ward comprised of the Beech Hill, Burghfield, Sulhamstead and Wokefield parishes, and a single member Aldermaston Ward comprised of the Aldermaston, Beenham, Brimpton, Padworth, Ufton Nervet and Wasing parishes. The new two member Burghfield ward would have had an electorate of +11% compared to the average number of electors per member predicted for 2022,
    [Show full text]
  • Padworth Newsletter 131.Pdf
    No. 131 November 2019 Free As the leaves turn to gold, orange and red, there is definitely a feeling in the air of approaching festivities. In the Newsletter you will find info about fireworks displays (p6 & 10), quiz nights (p1 & 11), Christmas markets (p6, 11, 15), a candle auction (p4), the usual Aldermaston Nativity Play (p6) and the pantomime which once again comes to Padworth Village Hall (p5). There’s something for everyone so do have a good browse through. Your support for local activities is greatly appreciated and helps keep the community alive! Congratulations to The Willink for being selected as a Maths Hub lead school for the South West of England (p5) and to Mortimer Fire Station for being awarded Fire Station of the Year by Royal Berkshire Fire & Rescue Service (p5). Mary & Sheila Deadline for next issue: 25 November 2019 Dates for your DIARY Saturday 2 November Jumble Sale (p2) Monday 4 November Beenham PC (p10) Wednesday 6 November Aldermaston History Group AGM (p8); Mobile Library (p12) Thursday 7 November Aldermaston & Wasing Ladies Group (p3) Friday 8 November Fireworks Display Padworth (p4 & 6) Saturday 9 November Fireworks Display Mortimer (p10) Monday 11 November Padworth PC (p2); Mobile Library (p12) Tuesday 12 November Aldermaston PC (p9) Friday 15 November Macmillan Quiz Night (p1) Saturday 16 November Save the Children Coffee Morning (p11); Cantemus Concert (p8) Sunday 17 November Christmas Market at Douai Pavilion (p15) Tuesday 19 November Padworth & Aldermaston WI (p2) Saturday 23 November Alder
    [Show full text]
  • Need a Friend? Ourour Coordinator Team Need a Friend? Meet Our Ourtwo Service Team Co-Ordinators
    Need a Friend? OurOur Coordinator Team Need a Friend? Meet our Ourtwo service Team Co-ordinators. ManyMany peoplepeopleNeedNeed findfind themselvesathemselvesa Friend?Friend? alonealone forfor oneone OurOur Team Team reasonManyreason people oror another,another, find orthemselvesor areare isolated,isolated, alone perhapsperhaps for one Meet our two service Co-ordinators. Many people find themselves alone for one MeetMeet our our two two service service Co-ordinators. Co-ordinators. Manyduereasondue toto people illnessillnessor another, find oror disability.disability. themselves or are isolated, TheyThey alone justjust perhaps don’tfordon’t one getreason out as or oftenanother, as orthey are would isolated, like perhaps or see as reasongetdue out to or illnessas another, often or asdisability. or they are wouldisolated, They like just perhaps or don’t see as due to illness or disability. They just don’t duemanymany to peoplepeopleillness orasas disability. before.before. They just don’t getget out out as as often often asas they wouldwould like like or or see see as as Befriending get out as often as they would like or see as Thismanymany is people wherepeople T asasiiM before.before. FriendsFriends cancan help.help. WeWe findfind manyThis is people where asTiM before. friends can help. We Befriending a volunteer with matching interests and Befriending findThisThis isa is wherevolunteer where TTiiM Mwith FriendsFriends matching cancan help. help.interests We We find findand BefriendingService personality. This person visits you or phones
    [Show full text]