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The Brittle Bone Society
NEWSLETTER
Supporting people who live with bones that break
Issue No. 109 – Winter 2014
Merry Christmas
BBS FIGHTS FOR NORTHERN IRELAND HOSPITAL SERVICES
BBS SLAMS SHOCK NEWS OF PAMIDRONATE SWITCH TO SHEFFIELD CHILDREN’S HOSPITAL BBS made various representations to senior members of Belfast BBS PROTEST Health Trust, to senior Parliamentarians whom we had met and In October families learned their Pamidronate infusion service (PAM) was to cease and all patients were instead to begin planning to fly to Sheffield Children’s Hospital. BBS accept some families are happy to travel to Sheffield Children’s Hospital and that is their choice. The issue raised with the BBS, was that without notice given of the plans to pull the plug on Pamidronate infusions at the Children’s Royal Hospital Belfast, and no option but to plan for trips to Sheffield Children’s Hospital – families were left stunned and concerned.
worked with recently and we also asked Chairman of our Medical Advisory Board, Professor Bishop if he could help. Prof Bishop gathered the relevant Northern Ireland healthcare professionals together and asked they do their utmost to seek a solution. We understand a compromise has been reached and administering PAM to those children who want their treatment locally continues. Chairman Elaine Healey and CEO Patricia Osborne gave firm assurances to Northern Ireland families they would do whatever possible in the name of the BBS to help keep services in Northern Ireland.
CHRIS MACRAE - MOST CARING HARRY CROOKHAM-BURKE CHILD OF COURAGE In May this year Janey McKinna got a telephone call to inform her that her son Chris Mcrae had won ‘Most Caring Young Person’ from the Charity WellChild. In September they were whisked off to meet Prince Harry at a star studded ball in London’s Park Lane.
Congratulations to Harry CrookhamBurke on winning Child of Courage award, presented by Rock FM Cash for Kids.
Chris and Gaby Roslin
Aside from Prince Harry, there were many more famous faces at every table. Chris was presented with his award by Alexandra Burke and Vernon Kay. The whole night was an amazing experience for the entire family and having Gaby Roslin ask for a photograph doesn’t happen every day! “I just want people to be happy, if I do something for myself I feel guilty, I’m happier helping people be happy.”
JORDANNE WHILEY, PATRON Paralympic champion and 4 times Grand Slam Wimbledon winner Jordanne kindly accepted the invitation from BBS Trustees to become Patron of our UK Charity. See more inside this issue on page 5.
Harry also won our OI CAN Award at our Annual Conference 2014. Child of Courage - Harry Crookham-Burke
MONIQUE JARRETT – INDEPENDENT LIVING Congratulations to Monique on receiving the National Independent Living Award. Monique gives generously of her time to listen to, mentor and inspire other young disabled people who obviously gain a lot from her confidence and experience. She has first-hand knowledge of the worries and Monique Jarrett difficulties facing young disabled people but her achievements illustrate that they too can aspire to the same hopes and dreams as any other young person.
EVERYONE AT THE BBS WAS DELIGHTED TO HEAR OF THESE THREE AWARDS…….. ALL WELL DESERVED PRIZES BY THREE TERRIFIC YOUNG PEOPLE. 1
CEO UPDATE
CHAIRMAN’S UPDATE NEW PATRON
The entire trustee board are thrilled at the news we have secured our Patron Miss Jordanne Whiley. We appreciate her busy sporting calender will require meticulous planning for any engagements we Jordanne Whiley ask Jordanne to assist with, but we hope to raise the profile of our charity further with the prestige of backing from this incredibly talented young sportswoman. Elaine, Patricia,Tori Siegler and happy kids with cheque presentation for the Dragon Clay Club
Conference in London in August was another success. We continue to increase our share of financial sponsorship to support this our most costly event of the year.
SPONSORS We gained funding from Alexion Pharmaceuticals to help us with our new plan to launch a rare bone network, so that we can share expertise and grow our reach across the country. Our wheelchair manufacturers and distributors also continue to support our events.
VOLUNTEER SUPPORT SUCCESS
Elaine Healey
Since conference I have attended a number of events. In October I travelled to Northern Ireland with our treasurer Robert Gordon and Patricia our CEO. We held a productive meeting and continue to be delighted with the fast pace of progress with the Support Group under co-ordinator Vincent Hunter. Fundraising in Northern Ireland has been outstanding and the group are actively attending various policy events.
RARE BONE GROUPS We welcomed friends from different groups and other rare bone groups. We said hi to Taco from OIFE, met Dagmar from Care4Brittle Bones and Oliver Gardiner from XLH (x-lined hypophosphatemia).
CONFERENCE We know that the 1:1 sessions were missed – but Cool Bones seemed to grow in stature and we are excited at the prospect of more adult healthcare specialists joining our MAB. We have started planning our new patient workshops Thank you Angie for hosting our BBS for 2015. We aim to roll Gala Awards so well! out workshop events at or near to the hospitals of Highly Skilled Centres of Excellence – Sheffield, Birmingham, London (GOSH), Bristol, Yorkhill and Glasgow. We also aim to host events in Manchester and will consider other parts of the country if we can get the partnerships working together with the various health boards and hotels to suit. It was great to welcome Professor Bishop to our Trustee meeting in November. We heard about new treatments being developed and discussed governance of the Medical Advisory Board. Happy Christmas
Welcome new Trustee Mirrick Koh and Andy Mills re-elected with Trustee Harry Venet, and Treasurer Robert Gordon
WEBSITE I am sure we are all pleased to finally see a brand new website for the BBS. Our thanks to Trustee Andy Mills. Thanks to Simon Mckeown for supporting the previous site and now its handed over, the new web site is fit for purpose for all the different activity we are involved with. A busy year planned ahead, new patient workshops and exciting new research opportunities. We welcome the help provided by our Medical Advisory Board and have asked Professor Bishop to invite some more adult specialists to join us. Merry Christmas Everyone
Patricia 2
Elaine
VOLUNTEER SUPPORT GROUP & OTHER NEWS NORTHERN IRELAND
BBS Delegation Chairman Elaine Healey, Treasurer Robert Gordon, and CEO Patricia Osborne visited Lisburn, Northern Ireland for an update meeting with our BBS Support Group.
ALL IRELAND XMAS BASH
SCOTTISH PARLIAMENT SPECIALISED HEALTHCARE ALLIANCE (SHCA) BBS were invited to speak at an event at Scottish Parliament, launching the SCHA in Scotland. See BBS website for more information.
The Northern Ireland Support Group held a joint Christmas Lunch in Lurgan on the 14th December along with members from the Republic of Ireland.
Left to right: John Miler of Action Duchene, Patricia and former Health and Cabinet Secretary Alex Neil MSP
LONGRIDGE BRANCH SUPPORT GROUPS THROUGHOUT ENGLAND AND WALES Remember and contact your support group co-ordinators if you have any ideas for events, or if you want to offer assistance in helping organise meetings. We would like to take this opportunity to thank Maureen Groom who has been the co-ordinator for Birmingham since the group started. Maureen has recently taken a step back and Gursharan Kaur has offered to take over in her place. During 2015 we look forward to working alongside the hospitals and organising patient days. Watch this space for more information.
PATIENT DAY – SCOTLAND
We were delighted to receive a cheque for £3700 from our long standing Longridge Branch and supporters John and Gerty Farmery. The BBS would like to extend a big thank you to the group for their continued outstanding fundraising efforts.
VOICE 2015 We are pleased to confirm our Annual Youth Event, VOICE, will be held at the Hilton Hotel at Gatwick Airport. The date is still to be confirmed, but will be announced within the next few weeks. If any member between the age of 16 and 30 would like to find out more about this event, please contact Coreen at coreen@brittlebone.org
We are planning to hold a Patient Day in Dundee on Saturday the 28th February. Further details we be available in the New Year.
SHEFFIELD CHILDREN’S HOSPITAL XMAS PARTY
CROSS PARTY WORKING GROUP-RARE DISEASE
Elaine, Patricia and Elaine, Patirica and Coreen with the Sheffield Hospital Team Coreen attended the Sheffield Children’s Xmas bash and had a blast! We met lots of BBS members and gave them updates on our new patient workshops for 2015... The Sheffield staff are keen to raise funds for their next children’s Christmas event and are running a 10k to raise money to fund this. We said we are happy to help them.
Coreen and Trustee Yvonne Grant attended a meeting at Scottish Parliament to learn from the Scottish Medical Consortium about funds available for new medicines for rare disease. See BBS website for more information
Yvonne Grant, Trustee
To find out more see: www.justgiving.com/boneteam-percypud
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BBS PATIENT WORKSHOPS ROADSHOW The BBS are looking at holding a number of one day events throughout 2015 in conjunction with the Highly Skilled Centres of Excellence. These events will be held in various locations and will allow members to access BBS services and support.
We are aware the annual conference can be an expensive weekend for families. These one day events will allow more individuals the opportunity to attend localised events on an informal basis, and to hear talks from healthcare professionals. We also plan to invite individuals with similar rare bone conditions like Hypophosphatasia. To ensure you are on the mailing list for these events, please contact HQ with your email address. Information will also be available both on facebook and the website in the New Year or you contact Coreen by email at coreen@brittlebone.org
BBS MEMBER RESEARCH UPDATES - RUDY
BBS RESEARCH UPDATES - VIBRATING PLATES
Elaine Rush caught up with BBS staff to tell us how the planning of the RUDY study is coming along.
Whole Body Vibration as a treatment for children and young people with Osteogenesis Imperfecta is the subject of a research study currently being carried out by Dr Hogler and the OI Team at Birmingham Children’s Hospital.
Elaine told us, she continues to enjoy her involvement in the Rudy project and Elaine said it is good to see how far it has come in such a short while. In particular Elaine likes the Skype meetings with Dr Kassim Javaid, which means participants are all kept up-todate with progress and new ideas with all the other study members, and Elaine says this has been invaluable.
Dr Kassim Javaid
“It’s good to know so many O.I members have already joined and hopefully this will encourage other members to join as well. I think the more we talk about Rudy the better, as this will show our long term involvement and keep the momentum going. I like to think of this as an investment for all future O.I.er’s!” If you would like to find out more visit: https://research.ndorms.ox.ac.uk/rudy/
Patients are recruited in pairs – they are assessed and one of the pair is randomly allocated to use the vibration plate and the other one will be the control. The patient who is allocated to use the plate will then have it at home to carry Dr Wolfgang Hogler out a programme of exercises each day. After five months, both patients will be reviewed. This treatment is used widely in other countries and for other conditions, but we are evaluating how useful it will be for British children and young people with Osteogenesis Imperfecta. If we prove that it is useful, it may become another option for a non-drug treatment. We have just enough time to recruit a few more patients, so if you are interested in taking part, please email janis.scott@bch.nhs.uk or telephone 0121 333 9480 as soon as possible.
SPEAKERS AT BBS CONFERENCE FILMS OF THE TALKS CAN NOW BE FOUND ON BBS YOUTUBE.
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Professor Faisal Ahmed & Dr Catherine DeVile
Dr Nick Shaw
Professor Nick Bishop
Emilie Hupin & Chris Clark
Dr Richard Keen
Mr Andrew Reid
GAME SET AND MATCH FOR BBS
BBS NET THEIR PATRON MISS JORDANNE WHILEY We were delighted to net the support of Jordanne Whiley recently, when she kindly agreed to be patron of our Charity. Chairman Elaine Healey and CEO Patricia Osborne offer their best wishes to Jordanne and the only problem ahead will be managing to squeeze in BBS appearances and appointments around Jordanne’s hectic sport and social calender. The entire BBS Trustee Board and membership support us in this fantastic move and we are delighted to welcome Jordanne to the prestigious role of Patron for our proud UK Charity. Watch facebook and website for more updates.
BUILDING BRIDGES – BY DAGMAR MEKKING OF CARE4BRITTLEBONES
Jordanne Whiley and doubles partner Yui Kamiji
Care4BrittleBones was invited to participate in the BBS Annual Conference. The foundation (www.care4brittlebones) is a charity geared to one single aim: fundraising for more and better OI research.
UK RARE DISEASE PLAN
I would like to express my deep Dagmar Mekking gratitude for this invitation. I did not know enough about what the BBS has to offer, but am convinced that your organization is ahead of most (if not all) national OI organisations that we have in Europe. It’s been a true inspiration to experience the warm and inclusive British OI Community, the very thought provoking contributions of top medical experts like Prof. Nick Bishop and fun-filled social programme. All of this has given me unforgettable memories for which I am grateful. In addition, we have made a few important steps forward: You can read all of Dagmar’s comments on www.brittlebone.org
SANOFI PATIENT GROUP BURSARY AWARDS EVENT Secretary John Phillips and CEO Patricia Osborne attended the House of Lords as winners of the above scheme. We were delighted to be asked to attend the event hosted by Barnoness Neuberger recognising the work of our charity – the award helped us fund our Cool Bones project in 2013.
Secretary John Phillips
The Rare Disease Plan was created by the UK Government and set out 51 commitments. All 4 UK countries will work together in order to meet these commitments but each country has created an implementation plan. Consultation events were held with healthcare professionals, patient organisations and the general public. In conjunction with our members and the Medical Advisory Board, the BBS made significant contributions during the draft stages of the Implementation Plans. We look forward to seeing how the new implementation plans are rolled out and monitored.
SPECIALISED HEALTHCARE ALLIANCE (SHCA) Specialised Healthcare Alliance – BBS continue to attend these meetings a few times per year to keep abreast of any plans for specialised commissioning and what changes may lie ahead for integrated care pathways and specialised commissioning. The SHCA helps our group by engaging at senior level with policy makers and the views of the group are made known and at least the views of organisations representing rare conditions are being heard on big policy matters. We were told of the group’s plans in the short, medium and long term, to look at immediate budget overspends, shadow co-commissioning with CCG’s, staffing structural changes, the NHS 5 year forward view, changes in scope and the need for transformative change. We were invited to an event on the NHS and money discussing health budgets, NHS England, CCG and the Dept of Health. Looking at financial pressures facing the NHS and challenges. For further information see the SHCA website.
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CHINA CALLING
BY KAT WATKINS
In September 2014 I undertook the holiday of a lifetime to somewhere I had always wanted to go Beijing, China. I had no idea how good the access would be although I was hoping that after the 2008 Olympics it would be OK. It exceeded my expectations as there were dropped curbs everywhere, underground subways (although the vibrations up and down the ramp were extremely bone shaking). I was also able to get onto the tube. I went to many different places, Tiananmen Square, the Forbidden City, Beijing Zoo, the Summer Palace, the Great Wall twice, I dabbled in bartering and got some good bargains at the Pearl and Silk market and the People’s museum. I even met a group of lovely young ladies with OI in the People’s museum! To get to these places I had to use a taxi, Mr Wong was an incredible man, he installed a fully automated tail lift overnight; that would never happen in Britain! The Chinese people made me feel so welcome, I loved the culture; and the respect everyone showed for one another, the food was also amazing, I’m never eating another Chinese meal over here again. Would I go back? Definitely!
INCREDIBLE INDIA
BY GURSHARAN KAUR
In October I travelled 13,000 miles around the north and west coast of India, spending time with family, travelling and working with some charitable causes.
This included sponsoring Gursharan Kaur - Volunteer Co-ordinator several camps taking Birmingham place at Bilga General Charitable Hospital where I serve as a trustee, providing free healthcare screenings, immunisations, medication and treatment for people who cannot afford this basic necessity. This service was to help people living below the poverty line in rural villages in Punjab, which equates to living on just 33p or less a day. I also spent some time at Unique Home for Girls Orphanage in Jalandhar, which looks after around 60 unwanted and abandoned girls. Due to many cultural and economic reasons boys are regarded as the preferred sex and consequently female foeticide is often the chosen path for women who feel they have no alternative. It was really lovely to meet the girls who are well looked after and live enriched lives and are provided with a good education and most importantly love. I travelled to India’s commercial capital Mumbai with its vibrant street life and India’s best nightlife. I can’t wait to go back! From there I went on to Goa which is unlike any other place in India. With its scenic beaches, palm groves and Hindu shrines standing side by side with Catholic churches, it was the most relaxing part of the trip.
Kat Watkins - Volunteer Co-ordinator Wales
I experienced one of India’s largest celebrations at the Golden Temple in Amritsar along with tens of thousands of people. Diwali is a panoramic festival of lights that spans and unites the various regions and people of India, it was a truly amazing trip of a lifetime.
OIFE AGM HELSINKI – SEP 2014 I was delighted to attend the OIFE annual business meeting, and to represent the Brittle Bone Society. OIFE is the umbrella organisation whose membership is made up of national OI associations.
At their annual Business Meeting representatives from throughout Europe came together to exchange knowledge with each other. The full minutes from the AGM can be found at http://www.oife. org/the-oife.
BY COREEN KELDAY
This is currently being looked into by the BBS. If anyone would like to forward stories which we could upload please forward to coreen@brittlebone.org For more information about OIFE please see http://www.oife.org/ index.php/EN/
The meeting provided a great opportunity for the BBS to meet and work with other OI patient groups from around Europe. There were 10 countries in total represented. (The UK, Germany, Netherlands, Italy, Spain, France, Belgium, Norway, Denmark, Finland and Switzerland). We discussed areas such as: Finances, Membership, Website updates, communication and literature. Each country gave an update on their past year’s activity. We also discussed forthcoming events. The Norwegian OI Society will host the 2015 AGM. OIFE are hoping to have their Youth event hosted by Germany in 2015, and we discussed the possibility of an Adult event being organised. Using platforms such as Rare Connect was spoken about as a means of communication https://www.rareconnect.org/en.
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OIFE Delegates in Helsinki (Coreen back right and Ute Wallentin centre)
CONFERENCE 2014 The venue was located at London Heathrow. It all kicked off in the usual relaxed and friendly way on Friday evening. Guests were welcomed by Chairman Elaine Healey and CEO Patricia Osborne. Our speaker at the family evening buffet dinner Friday night at Conference on Friday evening was Professor Nick Bishop and after an interesting talk Professor Bishop stayed to chat with guests into the night.
On Saturday the conference was formally opened by The Worshipful, the Mayor of Hillingdon. Speakers throughout the weekend from NHS hospitals across the country, covering topics on adults/pain management, hearing, and general updates on OI treatments and therapies. Sadly our mental health speaker Dr Twynholm was unable to attend but Dr Nick Shaw kindly stepped forward to fill the slot with a really interesting talk about the service in Birmingham. He managed to fit this in along with his contribution to Cool Bones for 11-15 year olds. Business section went smoothly with our AGM held on Saturday. Some questions raised and resolutions proposed and passed. Trustee Andy Mills was unanimously re-elected and newly co-opted Trustee Mirrick Koh – a lawyer with Linklaters Law Firm, was also successfully elected to the board. The BBS Kids Talent Show was hosted beautifully by Kerry Ingram who later sang to our audience. We had bonus songs performed by the Anighoro family. The glittering awards ceremony was another tear-jerker for most of us. On Sunday, we trialed a new style Questions and Answer session with delegates submitting questions prior to the event.
BY PATRICIA OSBORNE
Sports session at conference
Before introducing the panel the BBS introduced some special guests who had joined the conference weekend from a group of different organisations to help the BBS launch their exploration into building bridges to better bones with our hopes to develop a Rare Bone Network. BBS chairman and staff invited Dagmar Mekking from Care4Brittle Bones, Taco from OIFE, Oliver Gardiner from XLH network with apologies from HPP and Fibrous Dysplasis. The expert panel on Sunday included Prof Faisal Ahmed and Dr DeVile – BBS thought we would trial this format for general questions as the medics are moving away from offering the 1:1 sessions. Throughout the weekend we hosted a Therapy Stand which saw us utilise the expertise of OT, Chris Clark, and Physiotherapist, Emilie Hupin. Sports also featured over the weekend and on Sunday saw the return of the popular Darren Rees to offer samples of fun sports for our members to try out. Office Coorindator, Coreen Kelday, hosted a volunteer support workshop with the area co-ordinators Helen Lehane, Vincent Hunter and Kathryn Watkins. Saturday’s table top raffle event saw us bring in a whopping £549.11 and we want to use that funding to send a delegate to a European event if we can.
Kerry Ingram
COOL BONES
Cool Bones, now running for its second year was a huge success. The programme was packed full of talks and workshops for children aged 11-15 with OI and their siblings. The day was off to a lively start Cool Bones Kids with an ice breaker game from Chris Clark (OT) and Emilie Hupin (PT) from Great Ormond Street Hospital, to get the kids warmed up. We then had inspirational presentations from the Cool Bones mentors Penny Clapcott, Jhon Bateman, Marc Lambert-Clarke and Monique Jarrett about their lives as young adults with OI. We were delighted to have Paul Noble MBE deliver a talk about his experiences as a Paralympic swimmer and he even brought along his medals for all of the children to see. The afternoon session was a chance for the children to get creative with guidance from their mentors in order to make an educational film for their age group which will be shown to children across the UK and ROI in order to raise awareness of OI. Huge thanks to Ben Wiles and friends for another year of amazing filming. Sunday was filled with adapted sports taster sessions including team games, Volleyball and New Age Kurling. These sessions allowed the kids to stay active in a safe environment and even gave them some ideas to take back to their schools.
The 2015 venue and our new workshops will be announced early in the New Year.
CONFERENCE 2014 QUOTE ANDREAS MATSANGOS FROM CYPRUS I travelled from Cyprus to London in order to attend the BBS Conference with the hope to expand my knowledge on OI. It did not only fulfill my expectations but exceeded them. I had the opportunity for the first time in my life to meet other people with OI and experienced healthcare professionals and doctors. It was a positive experience that changed the way I was considering myself with Andreas with Elaine OI. Looking forward to the next conference!
TACO (OIFE)
FROM NETHERLANDS
It was a great conference, good laughs, meeting many old and new friends, the only “bad” thing about it was that it wants me to come back next year!
Dagmar, Elaine, Taco, Oliver and Patricia
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FUNDRAISING CONTACT chris@brittlebone.org TO GET YOUR FUNDRAISING PACK VIRGIN LONDON MARATHON APRIL 26TH 2015 If you were unsuccessful in the ballot, you can Daniel Hunt be part of the BBS London Marathon Team – we still have 3 places. With over 35,000 runners taking to the streets of London and over 1 million spectators along the marathon route, the London Marathon is the most exciting running event in the year and not to be missed! In order to secure a BBS place, we will ask you raise a minimum sponsorship of £3,000. Christine will be here to help you with your fundraising and to ensure you hit your target.
BRITISH 10K LONDON RUN JULY 12TH 2015
You may recall we featured a story about young Laura Pilkington who missed out medalling at top national events due to her classification, and how rules for classification of athletes with OI were deemed to be in need of a review.
Laura Pilkington
We caught up with Laura aged 18, who won a top attainment award at her school which was for the highest results for higher grade and also the ethicon prize for science. Laura was contacted by her school, St Margarets Academy, and asked to come back for the awards ceremony (first time they had asked a pupil back for an award who had left). Laura has been busy on a number of fronts: on her move to University, recently Laura took possession of her fantastic new motability car - so she can start learning to drive! We can also share with you that Laura has settled in well at her new University and we understand she is enjoying her student flat and her new found freedom! Laura didn’t get the promised amount of training hours for swimming she had hoped for but they are gradually being increased through her training with 2 different clubs! We wish Laura continued success.
The BBS has 18 places for this prestigious 10k road Matthew Churchouse race around the heart of central London. We will ask you to raise a minimum sponsorship of £200. Contact Christine if you would like more information about either runs. Places will be allocated on a first-come first served basis.
GREASE THEMED GALA BALL Taking place on Saturday 21st March in the Spread Eagle Hotel in Thame - go along dressed as the T-Birds or the Pink Ladies and raise some money for the BBS! Tickets will cost £35, which includes a 3 course meal, drinks on arrival and entertainment throughout the night and more! For more information please contact Christine at chris@brittlebone.org.
HAPPY BIRTHDAY DES KEALEY
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LAURA PILKINGTON
We had set up an online petition and we are grateful for the tremendous support you the BBS membership offered back to us. Within days of the BBS petition being launched, the IPC contacted our offices to confirm that they would be pleased to discuss. We have since made important submissions in this respect and we keenly await the outcome of any changes to IPC classifications.
Do you want to run the London Virgin Marathon in 2015?
93 Years Young – the BBS’s most senior fundraiser and fabulous ambassador. Hope you had a fantastic birthday Des.
MEMBERS STORIES
Des Kealey
PENNY CLAPCOTT – INSTRUCTABILITY Earlier this year Penny qualified as a level 2 gym instructor and gained further qualifications in supervising and programming exercise for people with disabilities. She found the course to be a nice progression from doing a Sports Development Degree and it was good to do something a little nearer to the ground than her circus work. She is currently working at a local gym and found that the staff and members have fully embraced having someone with a disability as a gym instructor.
Penny Clapcott at the Gym
Penny’s focus at the gym is to increase the number of disabled people using the gym as there are so many functional and fitness benefits from being active in a controlled environment. She has found the experience extremely rewarding with members coming up to ask her questions about their own exercise programme and treating her like every other member of staff. Penny is now looking forward to adjusting some of the things in the gym to make it more inclusive and also to working with other outside agencies to make fitness and exercise more accessible for all types of disabilities. She hope to continue to move forward with qualifying as a personal trainer in the coming months.
THANKS TO ALL OUR FUNDRAISERS chris@brittlebone.org BAXTERS, LOCH NESS MARATHON
SKYDIVE
Congratulations to Franck Crosnier who completed the scenic Loch Ness Marathon on 28th September and raised a super £710.
Louise Alway very bravely jumped from the sky to raise an amazing £460 for the BBS
MANCHESTER TO BLACKPOOL BIKE RIDE
LOOM BANDS
Huge thanks to Harry Watson and Max Haworth, two 15 year old boys who on 13th July this year cycled the 60 miles from Manchester to Blackpool and raised the tremendous sum of £911.
When Olivia Jones, age 7 cracked her femur, and was in a hip spiker she decided she wanted to help the BBS. We would like to say a huge thank you to Olivia and her friends Jasmine, Eleni, Caitlin, Ryan, Isabelle, Freya, Libby, Amy, Emilia and Bea who all worked very hard to make and sell loom bands and to raise an amazing £751.03.
SCHOOL SPORTS DAY Charlotte Binstead organised a stall at her school sports day and raised £71.
Harry Watson and Max Haworth
BIRTHDAY PARTY
CONCERT Tarela Aghanti organised a fundraising concert which was held in Harpenden on Saturday 19th July and her son Steven, who took part in the Kids Talent Show at our Conference was one of the singers. This very successful event raised £304.
Olivia Jones
Charlotte Binstead
Happy Birthday to both Mette and John Thielmann who held a big joint birthday party in July, with friends from all over the world - the party was held in Copenhagen - and asked for donations rather than gifts. The total donations came to the amazing £3880.45 and we would like to thank all their friends and family for their generosity.
RACE REPORT • C laire Shearer ran the Great North Run in September and raised £202
BUPA GREAT YORKSHIRE RUN
• Mark Kane Bristol Half Marathon in September and raised £329 • E lliot Bowley & Peter Smith ran the Nottingham Half Marathon in September and raised £323
Well done to Lee Hepplestone who completed this race who raised £172. Lee also ran in the NeuroCare Steven Aghanti singing at Conference Headstart 10k in April and raised £365 making a tremendous total of £537. Lee’s is pictured with his nephew Henry Batterby after the Great Yorkshire Run.
• Jenine Heward ran Run or Dye in September and raised £145 • E mma Cooke ran the Bournemouth marathon in October and she raised £435 • L ucy Darney ran the Cardiff Half Marathon in October and she raised £393 • A manda Davies ran the Oxford Half Marathon in October and she raised £363
JASON BAKER MEMORIAL WALK
• A bbi Evans ran the Chichester Half Marathon in October and raised £142
Jason had been discussing a sponsored walk for the BBS before he died 10 year ago. Lots of family members including his parents and children took part in a 10 mile walk in his memory on 31st May and raised the tremendous £899.
• G eoffrey Shaw ran the BUPA Greta South Run in October and raised £387
WALES HALF MARATHON Well done and thank you to Lisa Barnikel, Claire Rees and Susan Moseley for running the Wales Half Marathon on 13th July and raising the superb £1692.
GOLDEN WEDDING ANNIVERSARY Congratulations to Kay and Eric O’Hara.They very kindly asked friends and family for donations to the Brittle Bone Society rather than gifts and have donated the sum of £1460. They are pictured with their grand-daughter Lorna.
WHAT YOUR MONEY ACHIEVED WHEELCHAIR FOR KATARZYNA
“The new wheelchair is much lighter than the old one, so Katarzyna is very happy to going herself independently. It is easy to fold so can be easily take to the car if needed. Small wheels on the back and the lightweight help getting up curves, it is easier going on pathways and across roads.”
POWER WHEELCHAIR FOR FARIHA
O’Hara Golden Wedding celebration
Her Occupational Therapist told us “the power chair has given her a new lease of life! For the first time she is able to access the work bench in DT and is able to use the drill! She no longer has to use the resource room at playtimes and is rarely seen as she is too busy socialising with friends!! She also went to town shopping with mum and is now more confident and happy”.
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BBS MEMBERSHIP
IMPORTANT NOTICE
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. Coreen Kelday 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.
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.
As mentioned in the Winter Newsletter and voted by Members at the 2013 AGM it was agreed to simplify our Membership fee and structure.
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. 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. We will of course respect all previous arrangements for life members who have duly paid their one off fee, but some might consider making a further regular donation. 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
ELECTRONIC NEWSLETTERS
During 2015 we will be replacing out standard hard copy newsletter with more regular electronic ezines. If anyone still wants to receive a hard copy newsletter this can be requested by emailing bbs@brittlebone.org or phone us on 01382 204446.
FAREWELL REBECCA
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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.
DATES FOR YOUR DIARY 21st February 2015 Birmingham Support Group meeting
28th February 2015 Rare Disease Day Patient Day – Launch Dundee 27th March 2015
VOICE, Hilton Gatwick
19th April 2015
Virgin London Marathon
6th May 2015
Wishbone Day
9th May 2015 Birmingham Support Group meeting
CREDITS Editor
Patricia Osborne | patricia.osborne@brittlebone.org
Sub Editor
Harry Venet, Trustee
Enquiries
Coreen Kelday | coreen@brittlebone.org
Fundraising
Sorry to say goodbye to Rebecca. Thanks for all your hard work – you will be missed.
Christine Hope | chris@brittlebone.org
Rebecca is heading to a Children’s Charity in Aberdeen and the BBS wish her every success.
Winter & Simpson Print | sales@wintersimpson.co.uk
Print & Design
Rebecca Bramhall
Registered Charity Nos. England & Wales 272100, Scotland SC010951