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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 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 -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. 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. 2 if any readers have anything they would like to raise, then please FIRST CORPORATE don’t hesitate to get in touch – [email protected] SPONSOR “NEXUS” PERSONAL INDEPENDENCE PAYMENTS (PIP) Patricia, John and member Dom At the end of last year, we Hyams gave a presentation to surveyed our members in staff at the London HQ and look relation to their experience forward to a programme of events of Personal Independence by the staff at Nexus. http://www. Payments (PIP). We nexusunderwriting.com/ would like to thank every one of the 65 people who took part and responded. left to right Patricia Osborne, Dom Hyams and John Phillips Your feedback allowed us to analyse how the PIP process of application and EDNEY FAMILY assessment affects those within the OI community. Trustees are indebted to Steve and Leanne Edney for the time, Word analysis of PIP consultation energy and devotion given to supporting the BBS. The energy feedback and love contributed by this family and their incredible support network has been enormous and the entire Trustee Board wanted to state their thanks publicly. “29% of respondents had a decrease in their overall support amount”

VIP INVITATION The subsequent report was relayed back to Lord Shinkwin who Patricia was invited to attend the launch of the newly appointed kindly arranged for some senior level policy meetings. Since then, Royal Osteoporosis Society in February which was attended by the our CEO Patricia, Vice Chairman John Phillips and trustee Gareth Duchess of Cornwall. CEO Claire Severgnini met up with Patricia Cumming along with healthcare professionals – Dr Richard Keen in July to discuss possible cross promotional opportunities. and Ali Seasman (OT) attended a meeting to raise the points brought by Brittle Bone Society members. Vice Chairman John Phillips and CEO Patricia Osborne also attended a charity fundraising gala dinner event as guests of the We are now hoping to collaborate in the creation of a document Charity ‘Success’ (Brain tumour survivors) hosted by Dominic that will assist Capita assessors to understand OI and allow a more Grieve MP. The event raised a phenomenal amount of funds for consistent assessment process. this cause and we are busy making plans to host arrange a similar Thanks for your part in helping us hopefully influence this process event for the BBS for the better!

“I was asked how OI affects daily life as they thought it was PARLIAMENTARY MEETINGS just break a bone, it heals and then you get on with life [no Patricia recently attended a lasting effects]” meeting of the Specialised Healthcare Alliance (SHCA) in Westminster with representatives from various rare disease charities. SOFT BONES FAMILY DAY The guest speaker at the meeting Our Trustee, Angie Stewart attended the was Baroness Nicola Blackwood SoftBones Family Day earlier this month (Parliamentary Under Secretary of and has shared her experience of the event State at the Dept. of Health and for people with hypophosphotasia (HPP). Social Care) and the themes were Also in attendance was Trustee Prof Nick updates from NHS England and the Bishop. latest surrounding rare diseases and BREXIT. Specialised Healthcare Alliance Angie said: Baroness Blackwood spoke Angie Stewart Trustee about the Government’s current position on European Reference Networks (ERNs) and that they strongly encourage UK researchers “I had no idea what to expect when I was asked to talk at and clinicians to continue to be involved. the Soft Bones family day. I prepared myself to talk about my We were assured the UK Government is continuing to work with experience of living with osteogenesis imperfecta and being the EU Commission to ensure that the UK continues to benefit involved with the Brittle Bone Society. from research opportunities/research outcomes across the union. It certainly brought back some memories. A small group of There was also some reference people brought together by a shared experience of a diagnosis to the fears people hold around of Soft Bones (Hypophosphatasia or HPP). It was like the medication shortages. early days of the Brittle Bone Society, trying to grow and Overall, Baroness Blackwood’s develop to deliver a strong organisation to provide invaluable main aim was to give some support to families affected by this condition. reassurance the Government were aware of members’ concerns that Prof Nick Bishop and I made quite a team talking about the BREXIT could have on research medical aspects and the impact on life for the whole family. and care and urged charity reps to Friendships were made, knowledge was shared and the kids write to her with specific concerns. had fun. I’m very proud to support the Brittle Bone Society Patricia is consulting with to create the ‘Building Bridges to Better Bones’ network.” Baroness Nicola Blackwood healthcare professionals to collate concerns in to do this – but

3 Delegates at the See, Hear, Smile Conference in Latvia HEAR, SEE, SMILE CONFERENCE IN LATVIA Our Support Development Officer Coreen, attended the Hear, on the Asteroid study and there was a presentation given on the See, Smile Conference in Latvia from the 14th to 15th June. This importance of and need for patient registries. Various countries was a unique conference discussing topics not usually covered in gave updates on their activities throughout the year and Coreen many OI scientific meetings. Presentations from specialists around spoke about the policy work we are doing in the UK as well as Europe and further afield covered the latest research in relation giving feedback from the to hearing, dental and sight or vision. There were 80 participants research workshop held from around 22 different countries present. We also heard during the Brittle Bone anonymous patient testimonies in relation to real life experiences. Society Conference in The full abstracts from this conference can be download on the Dundee in 2018. OIFE Website or via their Facebook page link. This was an interesting weekend and a great OIFE AGM opportunity to collaborate and discuss ideas with our After the conference finished OIFE delegates met for their European colleagues and to annual AGM. Mereo BioPharma attended and gave an update develop joint working ideas.

MEDICAL ADVISORY BOARD PRICE GUIDE FOR CONFERENCE IN Now in its 7th year our MAB continue to provide the Brittle Bone Society with an expert panel of leading healthcare professionals. READING

Trustee Angie Stewart has been invited to join the Medical Advisory Board as a layperson in order to bring her perspective Sample Costs for the full weekend (inc of accommodation, into account. Angie is delighted to accept this position and all meals and access to talks and activities). will offer her invaluable insight into future decision making on the board. Dr Javaid has also invited specialist dentist Dr Susan Single Occupancy £312 Parekh to join the board. Double Occupancy (per person) £216 Our own trustee board agreed to re-name the research committee Children under 12 £120 body – the Scientific Advisory Board. (SAB) Planning for our annual conference continued, with Dr Megan Riddington of GOSH collaborating with colleagues on a Registration and All Fees programme focused around psychological aspects in children as Agenda will be available soon well as adults. The board discussed the NHS specialised commission to identify any gaps in evidence that the BBS should focus on. Paediatric Travel information: please note the nearest accessible train specialist members of the MAB will be considering the next steps station is Reading Station which is approximately 20 minutes for paediatric OI guidelines to ensure it fits the intended audience away by taxi. and covers any current gaps in guidance. The board will also comment on a draft protocol for adult guidelines. The Medical Advisory Board had previously contributed to Grants are available to assist individuals and families with the discussion on PIP assessments and appeal letters, and the cost of attending. Please apply before registering for this was discussed further. The resulting document will be conference. reviewed by a BBS working group and BBS HQ before seeking If you aren’t able to access the website and need any a further consultation from our members, allowing discussions at Conference, with a member of Capita present. The NICE assistance with details, then don’t hesitate to the BBS consultation was also considered and the MAB will look to office on 01382 204446 and ask for Coreen. review this further to gauge the importance of BBS registering as stakeholders. 4 FUNDRAISING SOHPIE’S SUNFLOWER SALE SISTERS’ BIRTHDAY BBQ 7-year-old Sophie, who’s cousin Sisters Barbara and Rosemary celebrated their 70th and 75th Jack has OI, wanted to fundraise birthdays in June with a party at Rosemary’s farm in County for the Brittle Bone Society whilst Durham. It sounds like it was a fantastic day, with a BBQ, live working on her charity for music and beautiful sunshine to take in the surrounding views. Brownies. Along with her sister, they planted seeds and grew 70 The birthday girls requested that no gifts be brought, but sunflowers to sell at school. instead requested to the Brittle Bone Society. Selling them for £2 each, Sophie All three sisters, Barbara’s daughter and Rosemary’s son managed to sell all 70 in one day have OI, as did their father. They were overwhelmed by the and had additional donations to generosity of their family and friends, who in total, raised £650 top up her efforts raising a huge for the society!! £207.05. Sophie was also able to talk to A huge thank you to everyone involved and a big Happy other pupils at the school teaching Birthday from everyone at BBS HQ! them about OI and the work of the Sophie Brittle Bone Society.

MICHELLE’S BARCELONA MARATHON Thank you to the amazing Michelle Kristall-Monnickendam who ran the Barcelona Marathon recently to raise money for the Brittle Bone Society. Inspired by her good friend Joanna, who has OI, Michelle completed the course in 4 hours, 51 minutes and raised a huge £2715.

Barbara, Hazel and Rosemary

CABARET NIGHT FUN Thank you to Jason Titley and his partner Emma, who hosted a Cabaret night recently to raise money for the Brittle Bone Society Michelle and Joanna and Birmingham Children’s Hospital. The event was a huge success and raised £3000. LIZZIE’S SIT UP SUCCESS Thank you to the amazing Lizzie Owen who really got on board with our #BBSchallenge50 fundraising 40 IN 50 CHALLENGE campaign. Never one to shy away from raising Challenging funds and awareness of the Brittle herself to do 50 sit Bone Society, our very own Trustee, ups a day for 50 Angie Stewart has had a busy year. days and sharing Angie launched her 40 in 50 challenge the videos online in line with our 50th anniversary and on her own celebrations last year and we are personal blog. delighted that she has now completed The press all 40 challenges she was set. Lizzie Owen coverage Lizzie A huge thank you to everyone who got has had in her involved along the way. From brussels local area is testament to her fantastic challenge, creating lots sprouts to baby shark, Angie has raised of awareness of OI and of course the Brittle Bone Society. over £1600! Angie Stewart 5 TERRI’S HALF MARATHON HALF MARATHON SUCCESS FOR ANDRE Thanks to Terri Andre laced up his running shoes on Wishbone Day and ran Scott who ran the Milton Keynes half marathon to raise money for the Brittle the Gatwick half Bone Society. marathon on the 12th May 2019 Andre’s to raise funds for girlfriend has the Brittle Bone OI and he Society raising just wanted to give under £200. something back to the charity that he says “has helped my girlfriend a Terri Scott huge amount with their support”. JENNIFER’S BEN NEVIS CLIMB Completing the course in The lovely Jennifer Fallon, who has OI herself, recently looked out her walking boots and climbed Ben Nevis to raise money 2 hours 27 for the Brittle Bone Society, raising over £250. minutes and raising over £500 in the process, Andre is already planning his next fundraiser for the charity. Well done Andre running Andre. HEATHER’S CHARITY HAIRCUT A big thanks to Heather who recently went for the chop, with a sponsored hair cut to celebrate wishbone day and raise awareness of OI. Encouraging friends and family to spare a “bob for her bob” she raised over £500 for the Brittle Bone Society. Heather who has a number of family members with OI Jennifer Fallon wanted to do something different to mark wishbone day and raise vital funds for the charity at the same time. With 15.5 inches cut, STACEY’S TOY STALL Heather also donated her hair 13 year old Stacey Tyrell from Swindon who has OI, held to the Little Princess Trust who a toy school at her school fayre recently raising £25 for the provide real hair wigs to children and young people who have lost Brittle Bone Society. their hair through cancer treatment or other conditions. Well done Heather. KARL’S BRIGHTON MARATHON SUCCESS In our last newsletter we featured the amazing Karl Hoods, who had run the Bournemouth marathon last year. Karl told us how difficult it is to find a suitable training plan due to the fact that training had to be limited to once a week because of his OI, allowing more time for recovery between runs. Since then Karl has been back Karl Hoods training and in May ran the Brighton marathon raising a further £780 for the Brittle Bone Stacey Tyrell Society. 6 KEIRAN’S COLLECTION BUCKET ASIAN WOMEN 5 year old Keiran Dube, knows FESTIVAL only too well what it’s like to Thanks to our 2018 live with OI and regularly shares blogger, the fabulous updates about his journey on Shani Dhanda for the his Facebook page “Kieran’s of £312 which Osteogenesis Imperfecta story”. was raised during the first ever Asian Woman This Wishbone weekend he took Festival, held recently in to the streets of his hometown of Birmingham. Scarborough to raise awareness of the condition and vital funds for Shani herself is the the Brittle Bone Society. mastermind behind the Shani Dhanda Asian Woman Festival, With his collection bucket he which aims to smash raised a fantastic £174.21. Well stereotypes and stigma to empower and celebrate Asian Women done Kieran you should be very through culture, art and conversation. proud of yourself. Shani said “There are still massive taboo issues in our community and the Asian Woman Festival will be a safe space to tackle these subjects, giving attendees the skills to confidently navigate their way through society whilst celebrating the ever-vibrant culture and traditions of being Asian.” Keiran Dube To find out more visit http://www.asianwomanfestival.com

YEO VALLEY LIONS GOLF TOURNAMENT HAVE YOU GOT WHAT IT TAKES? The Yeo Valley Lions recently held a charity golf tournament The Brittle Bone Society are delighted to advise we have at Tall Pines Golf Course in Bristol. With over 140 golfers successfully secured a place in the 2020 London Marathon! taking part. This was the 7th annual charity golf day raising a We are often huge £5600 for the Brittle Bone Society. approached by Trustee Gareth people wanting to Cumming went run the London along on the day Marathon but and accepted the not many people cheque on our understand how behalf, giving difficult it is for thanks to all smaller charities involved and like us to even raising awareness getting to the of OI and the starting block. Brittle Bone If you would like Society. the opportunity A Lions to apply for this spokesman said place in the “Thanks are 2020 Virgin due not only to the competitors but to all who sponsored the Money London day and to the staff at Tall Pines Golf Club for their help and Marathon please get in touch with our fundraising officer Nikki on encouragement in achieving this wonderful result for a very 01382 204446 or by email [email protected] by the 30th worthwhile cause” September 2019. FACEBOOK FUNDRAISERS Another big shout out to all our Facebook fundraisers. In the last 9 months we are delighted to have had 66 Facebook Fundraisers raising well over £9000. Facebook fundraising is a simple and easy way to ask friends to support a cause that means a lot to you. To find out how you can do your bit simply head over to our Facebook page @BrittleBoneSociety. Thank you to everyone who has fundraised for the Brittle Bone Society over the last few months. We love hearing your stories and seeing all the amazing photographs. If we have omitted any of our fundraising stars from this issue, or their items have not yet been finalised or sent into us, we will be delighted to feature them in our next newsletter. £9000! If you are looking to fundraise for us or have a story you’d like to share then please contact our Fundraising Officer, Nikki at [email protected].

7 RAISING AWARENESS

‘IN OUR BONES’ MAX & FRIENDS CHARITY “A BIG BIG BIG thank you! Seriously, thank you for getting involved in our quest to create positive awareness and raise SINGLE some funds, whilst putting a smile on all our faces....Our charity single, ‘In Our Bones’ by Max & Friends has been Another first for the Brittle Bone Society a fabulous creative initiative, born from the creativity and was the amazing generosity of James Pryce. Then so many wonderful, caring charity single “In our and thoughtful folk got involved in all sorts of ways.” - Steve Bones” by 6 year old Edney Max Edney and his friends which was released in May 2019. The music and lyrics, written by James WORLD PARA Pryce were inspired by the way Max tackles CHEERLEADING FOR life with OI, and the EVE events which Max’s family and friends A huge congratulations to Eve, were doing to help who was selected to represent the Brittle Bone Wales in the World Para Society during their Cheerleading championships mammoth fundraising in Orlando this year. As the of 2018 which raised only member of the team with well over £70,000. OI she has really worked hard to earn that spot, despite her Max and his friends ongoing health issues. recorded the backing Team Wales came 2nd overall vocals at the La Barca in the World! Eve’s mum, recording studio Lyndsey beamed with pride near Petworth, West as she said “She has really Sussex with Nick done us all proud with her Sowden as the lead determination and ability vocalist and produced to get through the very hard by James Pryce. times to achieve this result.” Eve Since appearing on the Chris Evans Breakfast show last EGGHEADS WISHBONE WARRIORS FUN year and stealing the nations hearts with his BBC Children in Need appeals, Max has been rubbing shoulders with a host of celebrities who all backed this amazing single including Dr Ranj, Rick Astley, Strictly Come Dancing’s Kevin Max with Dr Ranj, Kevin Clifton, Stacey Dooley and Chris Evans Clifton & Stacey Dooley, Liam Payne Front row from left to right: Rhona Lang, Gareth Cumming, Wilma Lawrie, and Basil Brush to name a few. Paul Noble OBE, and Fiona Cowie And the celebrities weren’t the only ones to get behind this exciting “The Wishbone Warriors”, made up of Rhona Lang, Gareth new campaign, with the OI community really pulling together to Cumming, Wilma Lawrie, Paul Noble OBE, and Fiona Cowie show their support with the social media campaign and encouraging appeared on Eggheads, the popular BBC Two quiz show on the wider community to download the single. Thursday 7th February! Supported in the wings by team standby David Queen, the team raised awareness of OI and the Brittle Posts over the 2 weeks of campaigning reached over 110,000 people, Bone Society as they took part in a battle of wit with some of with 2/3 of those being people not directly following the Brittle Britain’s top quizzers. The show saw excellent performances from Bone Society on social media platforms, the single has really helped all of the Wishbone Warriors, with Gareth showing his prowess in to boost awareness of OI and the work of the Brittle Bone Society. history to defeat Egghead Lisa Thiel. Putting up a tough challenge for the Eggheads, only just missing out on the jackpot , they Although he didn’t reach the UK charts top 40, Max should be were ultimately defeated in the final 3-2! A huge congratulations extremely proud of how well the single did in raising awareness to the Wishbone Warriors on a fantastic performance, and of and funds for OI. All promotional clips and the charity single and course for raising awareness of Osteogenesis Imperfecta, and the full video are still available to view on our YouTube channel @ work we do here at the Brittle Bone Society. BrittleBoneUK.

8 LAYLA ALSOPP MISS MANSFIELD OUTSTANDING TEEN

As the fantastic Layla Allsop gets ready to hand over Layla was proud to do the bag pack with her sister Jasmine, who her crown after her year long reign as Miss Mansfield has OI and drew the attention of another family who live local Outstanding Teen we want to a look back over everything she to them, a mother and son who both have OI and are treated at has achieved in the last year and her amazing awareness and the same hospital as Jasmine. fundraising for the Brittle Bone Society. Wishbone day saw a huge social media campaign from Layla Since being with posts sharing facts about OI, what the Brittle Bone Society crowned in May do and encouraging people to change their profile picture on 2018 Layla has social media to the wishbone day twibbon. worked non stop in educating Layla also did an interview on her local radio station, talking people about OI about her time as Miss Mansfield Outstanding Teen and her and the Brittle awareness and fundraising for the charity and the work we do Bone Society. and the interview was played regularly over a period of time. She has been And she’s not done yet with a charity car wash at a fire station out and about in and various raffles still ongoing before she officially hands schools, businesses, over the title this month. Well done Layla we really can’t rotary clubs and thank you enough and you have been a great ambassador for meeting with local the Brittle Bone Society during your reign as Miss Mansfield councillors in her Outstanding Teen and we can’t wait to see what you do next. home town and We look forward to seeing your final fundraising total and see was even invited you smash that £4000 target. to speak at a local business award ceremony. “This past year of me holding the ambassador title of Miss Mansfield’s Outstanding Teen has been absolutely Her fundraising events over the last incredible. I’ve loved every minute and I’m so honoured year have included to have had the platform to raise awareness and funds numerous raffles, for this amazing charity; the Brittle Bone Society. It’s tombola’s, bake such a rare disease, and I’m over the moon to have been Layla Allsop sales, summer fetes, the voice in my area to speak up about this and get the Christmas fayres, bag packs, name the bear competition and a recognition the charity deserves.” bonus . She hosted a Battle of the Couples contest at Mansfield Town Football Stadium which included a raffle, disco, food and a silent auction and raised £500 in one night. In February this year, Layla organised a charity fashion show which was so popular she had family and friends asking her to arrange a second which was held in June. Both fashion shows were a sell out and raised just under £700. Layla has taken her Tombola stall to her local hospital where she raised £112 and was able to talk to healthcare professionals and members of the public about OI and the charity. Supermarkets have also seen Layla out with her collections bucket, with her local Morrison allowing her to have her Tombola stall in store and Asda, allowing a bag pack.

Layla with family and friends bag packing in Asda

9 EVENTS FAMILY OUTDOOR EVENT up with people of all ages from around the country. This year we were delighted to host our first Outdoor Family Event, an “The exercises and Zumba were great and I liked that the OICan Event which took place at the Calvert Trust – Lake District, instructor has OI and was a wheelchair user as this made from Friday 3rd May to Monday 6th May. This fun weekend provided exercising feel more accessible.” a chance to take part in a range of activities, learn new skills and meet

involved in workshops and Lama Jiga from the local Dundee Nilupul HEALTHY LIVING WORKSHOP ran a mindfulness session for our members as well. Brittle Bone Society member Penny Clapcott ran an exercise and Zumba class and Prof Stuart Ralston, Rheumatologist from Edinburgh “Each workshop had its value and I thought it was pitched Uni discussed pain management and the TOPaZ Trial. Carrie Marr, at the right level. A very good mix and I would be keen to go Physiotherapist from Sheffield Children’s Hospital and Chris Clark, to a further one” Occupational Therapist from Great Ormond Street Hospital were

10 OTHER NEWS

INTRODUCING BLOGGERS – 2019-2020 PODCASTING TOPICAL UPDATES As part of our 50th Birthday celebrations, we launched our on guest blogs from Sam, Gem, Shani and Abbi who all did During Conference in 2018 we consulted with members how best to communicate the ongoing research and clinical a brilliant job and discussed some really great topics that information throughout the community and the resulting included; heading off to university, careers, the celebration of project conceived included the recording of Podcasts. Wishbone Day and accessing the benefits you are entitled to. We launched the first episode on Rare Disease Day in which This year, to continue, we are delighted to announce our new Professor Ahmed discusses the Office for Rare Conditions line up of guest bloggers, Dom, Elaine, Andy and Elaine! based at Glasgow Children’s Hospital and the Queen Elizabeth University Hospital. The second I’m Dom. I’m the Podcast communications director at Smart discusses the City software company Grid importance of Smarter Cities, as well as being research and this “a freelance TV and Multimedia was recorded by Producer. I previously worked Dr Javaid (chair on the TV productions for both of our Medical the London and Rio Paralympic Advisory Board) Games, and was the founding and member editor of the Disability Power100 Jane Errington. - Power List of Disability. I love to travel, play the drums and drink Dom Hyams strong coffees out of small cups! We have further podcasts planned on topics such as genetics, scoliosis and muscles and soft tissues I’m Elaine. I’m from Kerry, which will be available ” soon. I live in Cork and work as an office manager. I enjoy traveling, India is one of the highlights so far. I “have an unhealthy obsession with shoes combined with a bad habit of wearing odd socks. I swim regularly and I was a coxswain for my local CALLING THE OI COMMUNITY! rowing club. An appeal for members to get involved from BBS Chairman Elaine Elaine Corkery Healey and Chairman BBS Medical Advisory Board Dr Kassim Javaid. Clinical Care Guidelines & Services for OI My name is Andy, I’m 31 The Brittle Bone Society is continuing work to create a set of years old, and I have a previously ” Clinical Care Guidelines on what services should be offered for unrecorded type of OI. I’ve adults (people aged 16years and over) with all types of OI. been told by geneticists that it’s “somewhere between a 3 and a 4! We need your help! I’m an engineer, inventor, and To help start this process we want to hear from adults with OI. something of an entrepreneur. Outside of work I enjoy cooking, Deadline is 31st August. https://forms.gle/aaJgvFikYuGCqW4fA playing guitar and learning new ERN (European Reference Network) Registries tech skills. Andy Mills For children, adults, family and carers of people with OI Registries are a type of research study where people are tracked over time to see how the rare disease affects them. This is really important for rare diseases as the information helps researchers plan trial of new I’ve been a member of tests and treatments. The European Reference Network registry ” the BBS for as long as I can survey has been designed with patient and wants to understand what remember so I hope I can people with OI would want to get out of joining a research study. bring some experience to the The results of this survey will be analysed with responses around the team.“ I love cooking, reading, world to understand the needs of patients and published. drawing and travel. I’m also very The link for the survey is here and it would be fantastic if The interested in all health issues Brittle Bone Society community get involved - all children, adults, particularly healthy eating and parents and family could complete the survey. alternative therapies. Having OI can be a challenge, that’s why Deadline is 19th of August. https://www.surveymonkey.com/r/ERN- BONDpatients Elaine Rush it’s so important to support each other. If you don’t have access to a computer and you would like to contact the office 01382 204446 and we will do our best to ensure your views are noted.

” 11 MERCHANDISE GIFT AID Thank you to everyone who gave their input into the design of UK Taxpayers can give their donations a big boost by using our new car stickers. We are excited to announce that these are Gift Aid – for every £1 donated, the BBS receives £1.25 now available to buy for £3 each, with two different designs available. To order these or any of our other merchandise, if Gift Aid is added at no extra cost to the donor. You can please head to our website! download a Gift Aid form from our website or request one by contacting the office. Alternatively, you can fill out the online version of the Gift Aid form at: http://brittlebone. org/get-involved/fundraising/gift-aid/ Please remember: if you are fundraising and using a BBS sponsorship form, please make sure your sponsors give their full name, address (including postcode) and amount donated, to ensure that we can successfully claim the money back. CREDITS KEEP UP TO DATE Editor Patricia Osborne | [email protected] Please remember that the rate for full BBS membership is an annual fee of £20. We appeal to our readership to Editorial Assistant amend their payment arrangements to enable them to Heather Gordon | [email protected] receive membership benefits. If you haven’t adjusted this payment with your bank or PayPal account you will have General Enquiries automatically became a Supporter and will no longer qualify Tel: 01382 204446 | [email protected] to vote at AGM meetings. The BBS continues to respect signed up life members, but Print & Design hopes they will consider becoming regular Supporters. Winter & Simpson Print | [email protected] Make sure you let the BBS know if you change address to Brittle Bone Society, Grant-Paterson House, 30 Guthrie Street, ensure you don’t miss out on any news and events updates – Dundee, DD1 5BS email any changes to [email protected]. Registered Charity Nos. England & Wales 272100, Scotland SC010951

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