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NEWSLETTER Bo Issue No NE SO BO C I The Brittle Bone Society E E L T T Y Supporting people who T I R g live with bones that break r B .o e n NEWSLETTER bo Issue No. 118 – Summer 2019 tle www.brit READY FOR READING – THE GATHERING 2019 Make sure you don’t miss our annual conference and join us at the fabulous Wokefield Estate, Reading This year’s annual gathering will see a fantastic programme of speakers and facilitators headlining our event, including RESEARCH GRANTS ANNOUNCED! Dr Kassim Javaid, Chairman of our charity Medical Advisory Prof Ahmed Chair of our Scientific Advisory Board and his Board from Oxford’s Nuffield Institute; Prof Stewart Ralston committee recommended to our Trustee board to support the of Edinburgh University Hospital; Dr Catherine DeVile and Dr winners listed below. Megan Riddington of Great Ormond Street Hospital London and Dr Judith Bubbear from the Royal National Orthopaedic Sums in the region of £10k or more are being awarded by the Hospital. BBS Research grants fund to each of the chosen recipients listed below. Topics this year will We received a number of applications for research surrounding include: OI and those chosen are: sleep, fatigue, pain, new The therapy needs for adults trials’ updates on living with OI Asteroid and This study is aiming to quantify and describe TOPAZ; Cool Bones the types of soft tissue problems adults with our latest OI suffer with and what adults with OI news on Research; European Reference Networks (ERNs) and some perceived the problems to be. We hope this myth-busting on the importance around access to medicines. will be able to inform service departments. In the fun and entertainment stakes we bring the TV show Find out more on our website. Dr Judith Bubbear . .’EGGHEADS’ – to the Gathering 2019. We are thrilled we have TV personality and champion quizzer Barry Simmons as host – and Wishbone Warriors step up to the plate again for a nail-biting quiz - but who will be in the opposing team? We are honoured to welcome Lord Kevin Shinkwin back and NHS healthcare resource use and costs for he will be sharing a platform with award-winning writer Abi Brown; there will be a guest spot from Samantha Renke – Actress, people with Osteogenesis Imperfecta Disability Campaigner and TV presenter; and we will be bringing The care for adults with OI is fragmented, you the latest on a host of topics from previous bloggers and disability campaigners Shani Dhanda and Gem Turner. and most do not receive the quality of care they need. This research application directly Have your say at our popular workshop sessions being held on addresses the fragmented OI care for adults Sunday. but describing how adults with OI use We never forget your precious little cherubs at the Kids Club and NHS services in hospitals as well as in the Cool Bones – providing peace of mind for mums and dads and community. This information will be useful expert care provided yet again by ‘Mobile Creche’ Company Ltd. for people with OI, their families, clinicians Get out that diary and mark in 13-15th September. Do get in and policy makers. Find out more on our touch with us now to secure your booking! Dr Kassim Javaid website. Develop a novel combined anabolic and anti-catabolic bone specific drug to treat OI We aim to develop and in vivo test a new drug that will combine the stimulation of osteoblasts protein secretion to the bone resorption reduction by conjugating BBS trustees look forward to seeing everybody at the the chaperone 4-phenlybutyrate to the GATHERING DeVere Hotel in September alendronate. Find out more on our website. Prof Antonella Forlino 1 SUMMER GREETINGS FROM ELAINE & PATRICIA CHAIRMAN AND CEO SUMMARISE THE NEW MEDICAL ADVISORY BOARD MEMBERS Dr Kassim Javaid is our recently appointed Chairman following LAST 6 MONTHS on from Prof Nick Shaw and Prof Nick Bishop. Newly appointed healthcare professionals include Mr Adrian Gardner Spinal surgeon of Birmingham Childrens Hospital (BCH), Dr Vrinda Saraff, BCH, Dr Megan Riddington Clinical Psychologist GOSH, Lisa Mills OT Bristol Childrens Hospital. A review of the MAB has been carried out and Vice Chairman John Phillips is finalising Terms and Conditions. The latest MAB meeting took place in April and a full report is on page 4. STAFF UPDATE STRATEGIC PLAN 2019 - 2021 Trustees are grateful to all the team at HQ who are working Trustees agreed a full plan in March 2019. Fundraising and extremely hard to plan another bumper conference event in 2019. communications strategies are in the pipeline and include a Farewell Rosie and welcome to Heather, our new Communications revamp of our events programming, workshops, history bones tour Officer and Marianne, our Admin Support Officer. and a series of podcasts. NHS ADULT SERVICES CAMPAIGN CHARITY GOVERNANCE / ELECTIONS 2019 Adults with OI find themselves with little or no formal adult Trustees were pleased to agree to support and propose to re-elect healthcare services across the NHS. Many of you took part in our Robert Gordon who completes his current 3 year term, and to call consultation to help us present a strong case to policy makers and, we for support to elect recently co-opted Trustee Prof Margaret Smith have been campaigning hard for this change. Dr Ayesha Ali, NHS OBE to our Trustee Board. specialised commissioner and involved in this project will attend our Secretary Mirrick Koh has sent out calling papers for the AGM family conference in September. Patricia met Dr Ali at the rare bone 14th September at DeVere Hotel in Reading at 14.00 scoping meeting in London. See page 5 for questionnaire. Robert has served as Trustee and Treasurer for 9 years. Further information regarding Robert’s background and experience can be HISTORY BONES ON TOUR found on the Society’s website. Staff visited Ireland in November 2018 with the History Bones Trustee, Professor Margaret C Smith OBE was recently co-opted onto Exhibition. A project which we started in 2009 when Trustees the Board of Trustees in January 2019. She is seeking election at gifted the archives of the BBS to the University of Dundee. This this year’s AGM. Margaret is former chairperson of MS Revive project has seen us catalogue and highlight the invaluable historical and brings a wealth of experience. Further information regarding information and artefacts that chart the society’s history as well as Margaret’s background and experience can be found on the the condition of OI and the improvement in the care provided. We Society’s website. will be taking the tour around the UK, specifically to hospitals. If the members elect the above named candidates to the Trustee Board, the Society will have ten Trustees; the minimum required by our Constitution is nine. If the members vote against the BBS HQ FACELIFT election of both candidates, we will need to appoint (a) further Trustees agreed that a number of serious shortfalls around care trustee(s). and repair of the building was needed for HQ. Staff are thrilled Robert Gordon with the updated office facilities and it’s now upgraded sufficiently to foster much more modern surroundings for staff and welcome Trustee BBS Executive Team BBS members to visit and to host a planned series of events at the Having been a Chartered Accountant for over charity’s main office. 20 years, and along with my wife who is also an accountant, we run our own accounting firm. We deal with a wide range of clients including charities and with a keen interest in IT, I have developed IT BBS WORKSHOPS HEALTHY LIVING systems and controls for charities and other clients. We kicked off our workshop launch at the fabulous offices of DC With my experience, I have assisted the charity Thomson in Dundee with our thanks to our amazing supporters with their last three Strategic Plans. at the Northwood Trust. This workshop was a great success. Look out for more of these events in the months ahead. The aim of the Professor Margaret C Smith OBE Robert Gordon workshop is basically inviting people along for a day of training Margaret C Smith OBE has significant experience and peer support. There will be involvement from healthcare of healthcare both in the NHS and more recently professionals, but the one key differential is placing the focus on in higher education . She was the Dean of Nursing direct member input and lived experiences. at the University of Dundee from 2007 until 2018 and additionally had the role of Deputy Principal for Internationalisation for 3 years. She trained as OI CAN FAMILY OUTDOOR EVENT a nurse and midwife and then went on to specialise Fun in the Lake District. A great, fully accessible family event initially in intensive care nursing . She then moved into senior leadership and management and was full of activities with more planned. See full story on page 10 first appointed as an executive Director of Nursing Prof. Margaret in 1992 . She had a number of appointments as an C Smith OBE Executive Director of Nursing until she moved to BBS BLOGGERS higher education in 2007. Trustees wanted to thank our members who took part in blogging projects over the past year. Samantha Renke, Shani Dhanda, Gem During the last 10 years she has had experience as a non Turner and Abbi Brown wrote some great pieces and we have executive Director of an NHS Board and as a Trustee and invited each to attend Conference in September to take part in our Chair of a charity. 2019 conference programme.
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