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The Brittle Bone Society
NEWSLETTER
Supporting people who live with bones that break
Issue No. 108 – Summer 2014
JORDANNE WHILEY WIMBLEDON CHAMPION ALL SET FOR 25TH BRITISH OPEN IN NOTTINGHAM
Jordanne Joyce Whiley along with doubles partner Yui Kamiji won Wimbledon 2014 and we send our congratulations to them both. Jordanne (born 11 June 1992 in Birmingham) is a wheelchair tennis player and was Britain’s youngest ever National women’s singles champion in wheelchair tennis at the age of 14.
“On the back of an amazing victory in front of a home crowd at Wimbledon I’m really excited about coming back to the British Open and I hope that people who saw us on TV at Wimbledon will come out and support us in Nottingham and watch some tremendous tennis once again,” said Whiley.
Organised by the Tennis Foundation, the British Open is a crucial tournament for the world’s leading men’s, women’s and quad Yui Kamiji and Jordanne Whiley players aiming to gain enough She has Osteogenesis imperfecta as ranking points to qualify for the does her father, Keith, who was also a Paralympian and won a bronze NEC Wheelchair Tennis Masters, the year-end singles championship, medal in New York. which takes places at Lee Valley Hockey and Tennis Centre in the Wimbledon champions Jordanne Whiley, Yui Kamiji, Stephane Houdet Queen Elizabeth Olympic Park, on 26 – 30 November. and Shingo Kunieda are among 25 world top 10 ranked singles players There are still a limited number of free tickets available to attend the set to play for major honours in Great Britain once again when the 25th British Open. Claim your tickets by emailing disabilitytennis@ 25th British Open Wheelchair Tennis Championships takes place at tennisfoundation.org.uk. Nottingham Tennis Centre from 15 – 20 July.
CONFERENCE IN THE CAPITAL WISHBONE DAY 2014 across LONDON AWAITS THE BBS! Yellowtastic the land Exciting programme planned – Adults, mental health, latest treatments plus gala dinner awards, book now! Prices and details of how to attend are in this newsletter. Trustees are pleased to offer subsidised entry again this year, places are filling up so get your applications in now. Professor Nick Bishop is guest speaker at our informal Friday evening dinner and will present a talk on Saturday hoping you will ‘Tell us the Change you want as a result of any therapy drug you may take for OI’. We have posted a survey monkey questionnaire so we can fully prepare Prof Bishop for the suggestions and questions you may have. www.brittlebone.org We also have an amazing array of healthcare professionals signed up to attend all weekend, wonderful entertainment, a fully staffed professional crèche and so much more. See the enclosed leaflet for more information. And look out for Cool Bones TWO where our young people will be making their own movie.
Northern Ireland unveiled their first star studded Gala Ball in May ‘Unbreakable Spirit’. Area Ambassador and former Trustee Lesley Ann Starrett along with BBS Volunteer Area Coordinator Vincent Hunter were delighted with the final results, as was our Trustee Board. Thanks to all involved. Glasgow volunteer support group met up on the day and we were delighted Prof Faisal Ahmed and OT Liz Dougan also attended. Dundee City Council paid tribute to the work of the BBS with a grand Civic reception to honour Wishbone Day attended by VIP’s David and Margaret Grant MBE and Trustees Yvonne Grant and newest Trustee Mirrick Koh. Angie Stewart and Lisa Hedley held a fun day in Newcastle. Many of you held so many fun events we tracked on facebook. Fantastic yellow pictures to share – see page 9-10
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CEO UPDATE We have been busy on a number of fronts.
We have submitted final comments on POLICY to the UK Rare Disease Plan, Northern Ireland mum Silean Kelly joined me at House Patricia Osborne, Silean Kelly & Jim Shannon MP of Commons to raise issues about lack of specialised services for people with OI at an event run by the Specialised Healthcare Alliance. Further to this, a number of planned meetings will take place with senior policy makers in Government. Trustee John Phillips visited an event hosted by Nick Hurd MP during Small Charity Week on Policy Day. I spoke at a conference event by AKU in London, helping us grow our networking with similar organisations. We attended a launch event by D G Sanco in Brussels about ‘European reference networking’ covering the importance of sharing highly specialised hospital services and commissioning. We have continued working with the Disability Action Alliance, hoping to secure a top hotel chain to sign up to become a corporate sponsor of the group. Our projects on Education have seen us call for more dialogue with schools across the country whilst other Disability Action Alliance (DAA) projects have involved participation from BBS Members Penny Clapcott and Lizzie Williams with contributions on sport. More consultations are planned for Conference on access to work, volunteering and more. BBS members Elaine Rush, Gareth Cummings, Penny Clapcott and Christopher Lynch are all working hard on the RUDY project and we will give a full update at Conference. I attended our Medical Advisory Board in June at Bristol Royal Hospital for Children and we are currently reviewing our 11 medical factsheets, introducing two more, and we will review the term of office for medics serving on the board. We discussed the final agenda for Conference and speakers involved, with a final steer on our Cool Bones Programme for its second year. We are considering invitations to healthcare professionals with adult specialisms to join the BBS Medical Advisory Board and we are also looking to invite practitioners from the mental health field as well. Apologies for delays with our website but it should be in place before Conference in August. We have drafted our first paper for our new Irish Forum which will include Trustee Jacky Boyd, Area Coordinators in Ireland – Vincent Hunter and Helen Lehane, Dr Niamh O’Brien, as a parent of Lucy and of course bringing her healthcare expertise. The group will be chaired by Elaine Healey and Treasurer Robert Gordon and I will also be involved.
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CHAIRMAN’S UPDATE TRUSTEE SUPPORT
My gratitude as ever to the entire trustee board for their input in the past year, I’d like to welcome our newest Trustee Mirrick Koh, who has been providing pro bono support to head office for some time now. I want to thank you for your support throughout the year. Thanks to all BBS members like Elaine Healey and Elaine Rush Elaine Rush who are getting involved in different projects, Lizzie Williams, Gareth Cummings, Wilma Lawrie and Penny Clapcott – visiting Parliament, attending important policy meetings, you are all amazing and thanks. Your hands on involvement is really making a difference.
FUNDRAISING Another year of amazing events; gala dinners, cake bakes, can collections, bungee jumps, whether raising £50 or £5,000 – every single penny counts and we are grateful. Thank you Christopher Lynch for our new fundraising pack and Andy Mills for our website to launch at Conference.
VOICE I attended VOICE again and it just gets better each year. I welcome the input and skill from our new film makers, Ben Wiles and Ben Shelley, who fit in perfectly with the OI family. The visual images they capture for our BBS movie archive are so important to help Patricia communicate effectively to potential funders and supporters about the work we do.
IMPORTANT POLICY MATTERS Over the past couple of years Patricia has done her level best to ensure the BBS forged appropriate and significant alliances, useful and relevant relationships with groups and bodies that matter to us, to people within the OI community working with - Specialised Healthcare Alliance, RDUK, Healthcare Alliance and DAA and others. My Trustee Board are delighted that we are being given the opportunity to get more involved in policy matters. Sometimes the detail around policy and consultations can seem dull. But taking time to complete important evaluations and surveys can make all the difference. Our profile and and the nature of living with OI has enjoyed a significant boost, plus a rise in patient/ member involvement and participation has grown. I look forward to the final outcomes of the UK Rare Disease Plan plus the paper just launched for Republic of Ireland and I am proud we have played a vital part in shaping it.
STRATEGIC PLANNING 2015 & BEYOND
See you in August.
I can’t believe we are already looking to set up a trustee committee to look at our strategic planning going forward. If anybody has suggestions on areas you would like us to explore, please don’t hesitate to get in touch.
Regards,
Have a fabulous summer and see you all at Conference.
Patricia
Elaine
VOLUNTEER CO-ORDINATORS’ UPDATE PARLIAMENTARY
SCOTLAND – Cross Party Group on Rare Disease was attended by Rebecca Bramhall (Support Worker) and Wilma Lawrie (Scottish Support Group member). The meeting focused on co-ordination of care with presentations from National Services Division on National Managed Clinical Networks and how they operate. Subsequent presentations were given Wilma Lawrie by representatives from two of these networks regarding their work. SWAN UK gave an overview of their project supporting families without a diagnosis and encouraged organisations to connect with them. The next meeting will be held when Parliament is back in session and the group welcome topic suggestions for the coming year. The BBS held a Wishbone Day event at Beardmore Hotel in Clydebank in conjunction with the Scottish Support Group. This event was attended by 62 people and attracted 7 new families who had not been in touch with the BBS previously. Everyone who attended the day enjoyed themselves; it was also great to see some of the Medics from Yorkhill Children’s Hospital in Glasgow who came along to join us.
NORTH EAST – Angie Stewart and Lisa Hedley held the first meeting for this group on 4 May. They had a good turn out, new families came along, and really benefited from meeting others with OI. Plans are now in progress for a summer meeting.
OI BEARS Oliver and Olivia have now visited schools all over the country; they have been as far afield as Edinburgh and Galway, to Belfast and Norfolk. Oliver even spent Wishbone Day with the vets in Preston. All Support Group Coordinators have a bear and are more than happy to come and visit schools near you. We are looking at producing an educational film that will supersede this and will update everybody at Conference.
REPUBLIC OF IRELAND UPDATE Helen Lehane – Area coordinator for the Republic hopes to get meetings back on track in September, after the summer holidays. Helen sent on submissions to the list of topics that will be tabled at the BBS Irish forum.
Helen also attended the Rare disease day conference in Belfast in February which was informative and hopes to be able to incorporate some ideas picked up into the Irish support group. Helen attended the Northern Ireland support group ‘Unbreakable Spirit’ ball in Belfast which was a fantastic event and Helen congratulated all involved.
Helen Lehane
NORTHERN IRELAND SUPPORT GROUP BELFAST HEALTH TRUST Wheelchair eligibility Criteria Forum March – Date 2014 Area Coordinator Vincent Hunter has been invited to serve on a committee in setting the ‘criteria’ for wheelchair provision in Northern Ireland. Vincent reports this has been a huge success, with a final meeting on 4 June.
EVENTS NIRDP – PARTNERSHIP WORKING WITH BBS June 2014 BBS Members - Rosemary Haddock, Ursula Mulholland and Justine Mahood are attending the Northern Ireland Rare Disease Partnership meeting event in Belfast Ulster Hall on 17 June. Our CEO Patricia Osborne and Christine Collins of NIRDP are in regular contact sharing updates on the RDUK Plan and issues around services. BBS Support group are meeting with Christine Collins from rare disease strategy on 29 June, Belfast La Mon House Hotel.
BBS FUNDRAISING until June 2014 Christine Hope, our Fundraising Officer, will give a full report in this issue, but Volunteer Supporters in Northern Ireland are very proud of Alicia and Sonia Haughey who raised Lesley Ann Starrett significant sums, Sileann Kelly who was involved in a marathon walk. N I Area Coordinator Vincent wanted to extend special thanks to Claire Nelis for all her time, Starrett family commitment and hard work in assisting with the planning and overall success of the recent Belfast gala ball alongside Lesley Ann Starrett.
TOUCHBASE UPDATE – JUNE 2014 Business and community leaders across Wales supported the Disability Confident Campaign event which was held on 20 May in Cardiff. The event was held in support of disabled people in the workforce in order to demonstrate their talents and contributions to the economy. The aim is to break down barriers to ensure that disabled people have an equal opportunity to work and to make the most of their abilities. The Welsh Government is in full support of this campaign. The Department of Work and Pensions’ Aspire2 magazine, which featured two of our members in the August 2013 edition, is now available online. Articles are specifically for young disabled people and concentrate on education and training in order to find work. The magazine is empowering and inspiring and encourages young people to reach their full potential. To read the full document visit: https://www.gov.uk/government/publications/touchbase-dwp-news-for-advisers-and-intermediariesjune-2014
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THANKS TO OUR FUNDRAISERS LONDON MARATHON 2014 Paul Sanderson and Gary Dobson, our two amazing London Marathon runners, between them raised £7000 for the BBS. A big thanks from everyone for all their hard work. “In October 2008, when my brother Craig passed away, I made a promise that I would run the London Marathon in his memory and raise money for the Brittle Bone Society which is a charity that helps support people with OI as well as their families and carers. It took me almost 6 years to get round to doing it but I set a goal, I said I would do it and now I have. The run itself was far from pain free and the aftermath has seen me nursing a swollen ankle, aching muscles and tendons and losing 3 toenails. I never once really faltered or let the pain in my legs get the better of me even at mile 22 onwards when it did get Garry before the Race quite uncomfortable. What kept me going was that I had to finish, the reason why I was doing it in the first place and not letting down the people that had so kindly supported me. I can honestly say that it was an incredible day and a very satisfying experience that has raised money for a great cause and I truly hope that I would have made my brother proud.”
“It was an honour and a privilege to run for such a great cause as the BBS. The actual race I found to be just amazing and the crowds fantastic. It was great to take part in something I thought I would only see on TV.” Paul Sanderson
Paul during the race in BBS t shirt
Garry Dobson
EVA’S DIVAS Eva’s Divas are Silean Kelly, Margaretrose McCann, Heather Sturgeon, Karla McClatchey, Lauren Black, Sandra Pereira, Elly Crory, Wendy George and her husband and Yvonne Chambers. They are from the Portadown RFC Slimming World Group and walked the Belfast Marathon 8km Walk. They also had a relay team who completed the whole 26 miles of the Belfast Marathon – Steven Black, Sharon Rogers, Linda Geddis, Kathryn Mc Cracken and Bill Crory. The whole group raised an amazing £3180.
“We had a brilliant day. The weather was cloudy and it started to rain but that did not dampen our spirits. It was great!”
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ALICIA HAUGHEY A huge thank you to Alicia who organised a Coffee Morning and Fun Day which raised a brilliant £3465. Thanks also to her sister Sonia Haughey and to Stephen Elliott and Vincent Bunting who all helped and for the matched funding of £600 which they organised from the Royal Mail. Thanks also to the Royal Mail National Return Centre Community Action Team who made a donation of £150.
KIERAN JONES Kieran along with Wayne Jones, Craig Ward, Gareth Blore and Matt Cole raised money by competing in the April London Tough Mudder – a 12 mile extreme obstacle course designed by the British Special Forces which includes ice baths, electrified fences and a lot more. As well as completing the course they raised £500.
Cameron and his S1 class mates and a few members of staff did a sponsored walk from Ganavan to Dunbeg and back on the cycle path. Each of his friends took a turn to give Cameron a wee push in his chair, as they walked. En route they stopped for a picnic and some treats – they raised £359.60.
Oban High School classmates
The total Cameron raised is a tremendous £2578.60.
LEXIE MILLS Lexie and her family organised a very successful Wild West Evening in April. “We had a fabulous and exhausting night. Lexie stood without her walker but held my and her sisters hand and sang “Jolene” to 160 people massive cheer! I am delighted to tell you that we raised an amazing £1,250.00.”
“It was extremely hard but very rewarding, although I am still hurting from it. All the guys are feeling a great sense of achievement in raising the cash, and we all believe that it is definitely something that we would do again.”
MOSAIC HAIR STUDIO We would like to thank Mosaic Hair Studio in St. Albans for supporting the BBS throughout 2014. Their main event was a 13 mile cycle ride at Grafham Water which took place in May. Most of the team at Mosaic took part – Lucy Davis, Ashleigh Harvey, Annette Robinson, Sally Renwick, Siobhan Towner, Sophie Baars, Zoe Clark and Lucy Rodell. They were accompanied by Dominic Hyams who is Lucy’s lifelong friend. And they have raised £465 from the bike ride and another £114 from the salon’s 25th birthday - a super total of £526.
“Bike ride was fab. Dom came with us. You can see him in the pictures. We had a fabulous time. Ended up a sunny windy day that was perfect”
CAMERON ALLEN Cameron organised a Job-a-thon and held a cake sale - he raised £2218.40 His Job-a-Thon included an amazing list of jobs which he did over 2 days - farmer, baker, gardener, builder, airport baggage handling, ground maintenance, fire fighting & wildlife control, janitor, office worker, shop worker, photographer, journalist, fruit wholesaler, cinema usher and bus ticket printer.
Well done Lexie – we love the outfit.
RUNNERS 1) N euroCare Headstart 10k Lee Hepplestone ran in the NeuroCare Headstart 10k on 27 April for his nephew Henry who has OI and raised £365 2) B rentwood Half Marathon Laura Maycock, Dave Morse, Sarah Childs, Mark Boyle, John Childs, and Jamal Essalama all took part in the Brentwood Half Marathon on 23 March and raised £742
3) B UPA Great Manchester Run 2014 Sammy Rose and her sister Becky both have OI as does Becky’s daughter. Sammy and Becky took part in the BUPA Great Manchester Run 2014 on 18 May – well done for completing the run and raising £1672. Siobhan O’Halloran completed the BUPA Great Manchester Run and raised £739 4) S tafford Half Marathon 2014 Running despite an injury Suzanne Ball completed the Stafford half Marathon in an amazing 1 hour 52 minutes and raised £97.50.
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FUTURE EVENTS BRITISH LONDON 10K RUN SUNDAY 13TH JULY Good luck to the BBS team of 20 runners who are taking part in this year’s British London 10k Run - they will be part of an event of 25,000 runners which takes place on the world’s greatest road race route through the heart of central London passing many of the capital’s truly world class historic landmarks.
BEST OF LUCK FROM US ALL
Ruth and Danny Clarke
Other races which our fundraisers will take part in Wales Half Marathon Great Yorkshire Run Great North Run Bristol Half Marathon Loch Ness Marathon Nottingham Half Marathon
Chris Battersby
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July 2014 Sept 2014 Sept 2014 Sept 2014 Sept 2014 Sept 2014
Trustee Mirrick Koh (centre) with Jones Day Team
CHRIS BATTERSBY
Has two fundraising events planned for the next couple of months and he’s hoping to raise another £2000 for the BBS • a Fun Day at the Crown Inn, Marston Montgomery, Ashbourne on 12th July and • C harity Clay Pigeon Shoot with his firm Smith Gore on 25th September 2014
VOICE 2014
VOICE 2014 was held at Novotel Bristol Centre during April and was attended by 20 young people aged 16-30. The event attracted some new faces and was a great opportunity for delegates to catch up with their friends in the OI community. The programme was bursting with talented speakers including Dr Burren, Dr Javaid, Jordanne Whiley, Tracey Cox, Dee Pullen, Lisa Mills and Penny Clapcott. Topics ranged from progress in OI services to relationships and were enjoyed by all. Delegates also got the opportunity to enjoy a filming workshop hosted by Ben Wiles and Ben Shelley which gave them a chance to contribute to the success of the Brittle Bone Society through their media skills. The VOICE video includes extracts from our delegates’ short films and can be viewed at: http://www.youtube. com/watch?v=ED9DgaG7aDI
Friday and Saturday evenings offered a relaxed atmosphere where delegates could socialise with new and existing friends. Friday’s pub quiz was extremely competitive with the final scores being almost too close to call but Gareth’s Angels came through with 60 points to clinch the victory. The disco on Saturday night gave delegates the chance to show off their dancing skills with everyone heading straight for the dance floor. Feedback from the event was extremely positive and evaluation showed a notable improvement in confidence levels, inspiration and ambition, knowledge levels and connections to others within the OI community. VOICE will be returning in 2015 and we are currently exploring venues in the South East of England. If you have any ideas for topics email rebecca@brittlebone.org to have your say.
WELL DONE JHON BATEMAN COMMONWEALTH GAMES VOLUNTEER Jhon is helping the BBS as a mentor in our Cool Bones Programme at this year’s conference – read an excerpt below of how thrilled he is to be selected as a volunteer in the big sporting event in Scotland this year.
Jhon’s blog . . .In late January, I was told I had been successful in my interview in as much as it wasn’t a no, but not a yes either. I was on the reserve list of clyde-siders. In their own terms, they were looking for our perfect positions. I got a phone call from Glasgow 2014, and I couldn’t believe what I was hearing when I was offered a role! I was asked if I wanted to join the transport team, as a T2 driver and could I make it to
Glasgow to begin driver training! Unfortunately, by the end of the phone call I was informed this had been offered in error and they withdrew their offer.
However, hope was not lost...After some sweet-talking/stern words from my Dad, the call centre worker from Glasgow 2014 offered me a choice of two roles, both in the Village Operations team. I don’t have a clue as to what this really means, but as I said on the phone, I’ll take anything they offer me! In the end, we decided I would be a Village Operations Team Member at Satellite Shooting Village 1 (Sounds quite space-like, and I think I may need a bulletproof vest). This is a four star hotel in Dundee where athletes and officials competing in the shooting competitions at Barry Buddon will stay. (we hope Jhon will visit BBS HQ if he has time) . . . As I wasn’t interviewed for this role, I don’t really know what I have to do. The description appearing on my Volunteer Portal says the following: “Your role will involve you in a wide range of tasks that will ensure our guests enjoy their stay. You’ll assist in the registration of residents, including athletes and coaches, and you’ll follow-up and resolve issues to ensure everyone has a memorable visit to Glasgow.”
Jordan Barton, Richard Toner and Jhon Bateman
We all wish Jhon luck and hope he will get some pictures for us so we can see what it’s like to carry out this role. Well done again Jhon.
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GREAT ORMOND STREET Great Ormond Street Hospital for Children NHS Foundation Trust Clinical Service The OI service at GOSH was the first centre in the UK with a dedicated service for children with OI. It is now one of the 4 specialist centres in England. The service has 244 young people under its care, the majority from the South East region of the country. The service is led by Dr Catherine DeVile, Consultant Paediatric Neurologist.
Dr. Catherine De Vile
What we do The service runs 4-5 MDT clinic days a month and one of these is with the orthopaedic surgeon. Children may be seen in the hospital as in patients and outpatients. Outreach visits by team members are made to homes, schools and other hospitals. The therapists provide therapy advice and support to local families in liaison with local services and hydrotherapy sessions are available at the hospital. The psychologist can offer sessions for children and parents as required
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When young people reach 15-18 years of age they will be encouraged to attend the transitional/young adult OI clinic at University College Hospital London. This clinic run by Dr DeVile and Dr Caroline Brian endocrinologist (from GOSH and UCLH) runs four times a year and links with adult physician Richard Keen.
Research/Innovation
The team comprises consultant paediatric endocrinologists, orthopaedic surgeon, occupational therapists, physiotherapists, clinical nurse specialists, psychologists and social workers. There are close links with the Eastman paediatric dental team. The service is supported by two administrators.
GOSH Team
Transition
The service is involved in the gathering of data for the outcome measures being used across the four specialist centres and in developing the transition process for children moving towards adult services. The therapists have special interest in the relationship of back pain and core stability and have been involved in the development of a fully reclining wheelchair.
Social In July the team is having a tea party/social event at the hospital to enable families in the London and surrounding area to meet together.
RUDY
Elaine Rush gives us another update on the RUDY project . . . It continues in leaps and bounds and it was really exciting to be able to access the database and see how well it has progressed. I found it very user friendly and I don’t think anyone will have Elaine Rush difficulty in using it to log their medical history or complete the questionnaires. It was very thought provoking and fun! We continue to have regular Skype meetings to pool our ideas and this is very useful in keeping us informed, face to face, and to keep the momentum going. www.rudystudy.org
DON’T MISS YOUR CHANCE TO BE AT COOL BONES 2014
Conference 2014 Pricing Structure Early Bird Rates
Costs
All prices include VAT at current rate of 20%
For bookings made prior to 1 August 2014 Fully payment must be received by 15 August 2014
BBS Members Cost per person
No of people
Non BBS Members Cost per person
No of people
Standard Rate
For bookings made after 1 August 2014 Full payment must be received by 15 August 2014
BBS Members Cost per person
No of people
Non BBS Members Cost per person
Full weekend package per person (single occupancy)
£250.00
£270.00
£270.00
£285.00
Full weekend package per person (double/twin occupancy, based on two adults sharing – please note single occupancy rate applies if 1 adult sharing with child)
£185.00
£205.00
£205.00
£220.00
Children between 8 and 15 (Full weekend) Rate for day rates please contact the office
£54.00
N/A
£74.00
N/A
2 days (Saturday & Sunday) with Saturday night accommodation (single occupancy) Includes celebration dinner on Saturday evening
£175.00
£195.00
£195.00
£210.00
2 days (Saturday & Sunday) with Saturday night accommodation (double/twin occupancy, based on 2 adults sharing) Includes celebration dinner on Saturday evening
£122.50
£142.50
£142.50
£157.50
1 day (Saturday) with Friday night accommodation (single occupancy) Includes group dinner on Friday evening only
£125.00
£145.00
£145.00
£160.00
1 day (Saturday) with Friday night accommodation (double/twin occupancy, based on 2 adults sharing) Included group dinner on Friday evening only
£92.50
£112.50
£112.50
£127.50
Day delegate only for 1 day (Friday evening meal)
£20.00
£30.00
£30.00
£40.00
Day delegate only for 1 day (Saturday) – includes access to exhibition area, conference & workshop sessions plus a buffet lunch, and celebration dinner (per person)
£50.00
£65.00
£65.00
£80.00
Day delegate only for 1 day (Sunday) – includes access to exhibition area, conference & workshop sessions plus a buffet lunch (per person)
£30.00
£45.00
£45.00
£50.00
No of people
NB. To gain access to the assisted conference fund we recommend you apply as soon as possible to BBS HQ. Please complete the application form provided on our website www.brittlebone.org. Funding is allocated in accordance with a fair process including helping those who haven’t previously attended, however all circumstances are given due consideration. Alternatively you can call the office and ask for a form to be posted.
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LAURA SWIMS FOR SCOTLAND & BBS CALL FOR REVIEW TO CLASSIFICATIONS
The BBS asks that you get behind our campaign for the review of the swimming classifications for those with OI by signing our petition on change.org. Visit https://www.change.org/ en-GB/petitions/jane-d-blaine-ipc-swimming-review-theclassification-for-those-with-osteogenesis-imperfecta-oi to get involved.
LIZZIE WILLIAMS ATTENDS DAA SPORTS PROJECT ISSUES/BARRIERS
As members of the Disability Action Alliance we are working with others to look at various issues and barriers in Sport. See a summary below of some of the issues BBS member Lizzie Williams heard about and what the group needs to do. The group identified the following issues and barriers to increasing the number of disabled people attending sporting events :• A ccess to purchasing tickets on-line. Some organisations & clubs ask for ‘proof of disability’ before they agree to make reasonable adjustments (such as a carer being able to accompany a disabled person) - confirmation of Disability Living Allowance (DLA) at time of purchase is sometimes required and there is now confusion with introduction of Personal Independence Payments (PIP). Also, not all disabled people are in receipt of DLA/PIP . • A vailability of suitable or sufficient seating. Often disabled people, particularly wheelchair users, are separated from their friends and family or seated with opposing fans. • V enues are not all compliant with legal requirements of access – or some are to a ‘minimal standard’ but could go further. • L ack of audio descriptive commentary of matches for blind and partially sighted people, and induction loops for deaf people. • R ange of assistance offered to disabled people to navigate around venues differs hugely. We will keep you posted on the project. Thanks for attending, Lizzie.
JORDANNE WHILEY Country
Great Britain
Residence Halesowen, West Midlands Born
11 June 1992 (age 22)
Birmingham Laura Pilkington
OIFE NEWS
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Singles Grand Slam Singles results Australian Open
SF (2014)
OIFE will join the Finnish OI Association in September for their AGM in Helsinki which will be attended by a number of OIFE member organisations. The BBS are working hard to secure funding to send a representative from the UK in order to continue our networking throughout Europe.
French Open
QF (2011, 2014)
US Open
QF (2013)
Member organisations have pulled together their knowledge of OI and connections to healthcare professionals in order to answer a number of enquiries across Europe and indeed the world in the last six months. This continues to prove the importance of having relationships with other OI organisations and the value of cross-border working.
Australian Open
W (2014)
French Open
W (2014)
Wimbledon
W (2014)
Other tournaments Paralympic Games R1 (2008, 2012) Doubles Grand Slam Doubles results
US Open
SF (2013) Other Doubles tournaments
Masters Doubles
W (2013)
Paralympic Games
Bronze Medal (2012)
SABIA’S STORY
Sabia and her daughter, both with OI, enjoy life-changing independence thanks to charity donated Balder powered wheelchair. The below is an article which appeared on the ETAC (wheelchair manufacturer) website. Sabia Khatoon is an inspirational lady with OI who has been able to continue helping her daughter who also has the condition, thanks to a cutting-edge powered wheelchair and support from the Brittle Bone Society (BBS). Sabia is 49 and despite having OI, lives independently in Birmingham with her 10 year old daughter Aleena. Thanks to pioneering treatment at birth, Aleena still has the ability to walk whereas her mother is dependent on a powered wheelchair to remain mobile. Sabia has experienced over 450 fractures in her lifetime so the need for a safe and stable powerchair such as a Balder is critical to minimise bone damage. Despite living with a disability, Sabia is now able to support her daughter on a daily basis thanks to a world-leading Balder powered wheelchair. The Swedish leaders in assistive technology, Etac, design this wheelchair and each model is hand-built in Norway. Sabia’s Balder F280 powerchair has the functionality to keep her mobile on a daily basis along with the ability to care for Aleena. When her daughter is recovering from regular fractures in hospital or at home, the Balder allows Sabia to comfort Aleena without the need for additional carers. Ownership of this life-changing powered wheelchair has been made possible by the support of the Brittle Bone Society who obtained the funding needed to purchase this wheelchair. As Sabia has limited movement in addition to a shorter stature, she uses her ergonomic F280 powered wheelchair with its infinitely adjustable seat, to achieve multiple positions for increased comfort. This functionality greatly assists with pressure management, circulation and posture along with helping on a practical level. Its range of movement includes a powered seat raise so Sabia can engage with able-bodied people eye-to-eye and access high cupboards. Sabia’s independence and ability to help her daughter is priceless as she explains: “This is the second Balder powered wheelchair I have been lucky enough to own and I am so grateful to the Brittle Bone Society and Etac. Without this remarkable F280, I simply could not live alone with Aleena and help her grow up. When I was in need of a new powerchair, I contacted the Brittle Bone Society and explained my situation – they could not have been more helpful. They arranged for an independent Occupational Therapist to visit me within a matter of weeks to assess my situation. Without question I wanted another Balder as these models are so trusted and reliable which is absolutely essential when you are totally dependent on a powerchair for movement. The OT then liaised with the BBS who in turn contacted Etac so their friendly assessor Craig, could visit me to ascertain the correct Balder for my needs. Within a few months I was the proud owner of a new F280 that ensures Aleena and I can continue to gain the most out of life.”
Sabia concluded: “My Balder has been specially adapted with side transfer boards so I can move sidewards more easily in and out of my chair for times such as travelling in the car. My bespoke backrest has also been fitted with an air lumbar device for varied levels of firmness, plus my footrests are now fully adjustable for extra comfort. I know without the help of BBS, I would never have been able to own such a fantastic powered wheelchair and gain my independence again so quickly. I am eternally grateful to both the BBS and Etac and now feel sure I can provide my daughter with all the support she needs to achieve the best possible future.”
BBS TALENT SHOW – SING, DANCE, JUGGLE, RAP The ever anticipated BBS kids’ talent show is due to return at this year’s annual conference compered by Kerry Ingram. This year we will split the show on Saturday evening into two halves, one for 0-10 year olds and one for 11-15 year olds.
Lexi Mills
Last year’s show featured singing, dancing, drama and poetry and was a big hit with the audience. Make sure you get practicing to ensure this year is even better!
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IMPORTANT NOTICE
BBS MEMBERSHIP
As this copy goes to press we would like to say thanks to all BBS fundraisers, 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.
As mentioned in the Winter Newsletter and voted by Members at the 2013 AGM it was agreed to simplify our Membership fee and structure. Members will now pay £20 per annum. The Society will continue to respect signed up life members, but hope they will consider becoming regular supporters. We request any member with a regular standing order for membership to contact their bank and arrange for this to be increased to £20 so you may continue to receive Member benefits.
Coreen Kelday
If you choose not to contact your bank you will automatically become a Supporter, but will no longer qualify to vote at AGM meetings.
BBS SUPPORTERS LAUNCH
(BE A MEMBER AND A SUPPORTER) We appeal to BBS members and ask you to encourage friends and family to sign up as Supporters by completing our supporters form which can be found online or by phoning or emailing our head office on 01382 204446. We are asking for just £10 contribution per year, and if you wish you can give more. Being a BBS Supporter will work for people who want to contribute but may not wish to become involved in events or require any other support, they simply like what we do and want to see our charity flourish and grow. Or you may be a Mum or Dad with a youngster attending Cool Bones and see this supporters package – a step up until your child is old enough to become an active member with voting rights and fully participating in their charity. So if any of the above seems a reasonable option for you, then please get in touch to support your Charity and contact coreen@brittlebone.org
DATES FOR YOUR DIARY 22 - 24 August 2014
Annual Conference
18 - 21 September 2014
OIFE AGM
21 September 2014
Bristol Half Marathon
6 October 2014
Royal Parks Half Marathon
27 October 2014
Dublin Marathon
3 December 2014 International Day of People with Disabilities 19 April 2015 (tbc) Virgin London Marathon places available contact Christine
WHAT YOUR MONEY BOUGHT IN 2014
CREDITS
We would like to take this opportunity to thank all of the Trusts and organisations that support our many funding applications for specialised equipment.
Patricia Osborne | patricia.osborne@brittlebone.org
This month we wanted to feature an item that has made a lasting impact to one of our member’s lives. Matthew Gleaves from Darlington said “No more worrying about breakdowns and being stuck for days, weeks or months waiting for the repair man to get it right. Huge massive thanks to the Brittle Bone Society for finding the funding and all the super cool people who work there......I will no doubt be showing off my wheels on FB as soon as they arrive
OI QUESTION TIME
Professor Nick Bishop will deliver a talk on Friday evening at our annual conference giving further information about medication. In order to deliver this talk he has asked that the Brittle Bone Society approach our members and ask: What factors do you take into account before deciding to proceed with taking a specific medication for OI? On Sunday we will also hold the first ever OI question time giving delegates the opportunity to ask questions to a panel of healthcare professionals. What question(s) would you like to be answered by the panel? To give your feedback please complete the survey at: https://www. surveymonkey.com/s/P7FNYL7 , email rebecca@brittlebone.org or telephone the office on 01382 204 446.
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Please contact Christine at chris@brittlebone.org or phone 01382 204 446 if you would like a fundraising pack full of lots of ideas on how to fundraise like any of the above events. Remember to let us know about your fundraising events and we will promote them for you on the BBS website www. brittlebone.org , Facebook and Twitter.
Editor
Sub Editor
Harry Venet, Trustee
Editorial Assistant
Coreen Kelday | coreen@brittlebone.org
Support
Rebecca Bramhall | rebecca@brittlebone.org
Fundraising
Christine Hope | chris@brittlebone.org
General Enquires
Annette MacIntyre Tel: 01382 204446 | bbs@brittlebone.org
Print & Design
Winter & Simpson Print | sales@wintersimpson.co.uk Registered Charity Nos. England & Wales 272100, Scotland SC010951