The Brittle Bone Society
NEWSLETTER
Supporting people who live with bones that break
Issue No. 104 – Summer 2012
BBS MEDICAL ADVISORY BOARD LAUNCH!
WISHBONE SPECIAL p8-9
Medical fact sheets, policy consultations, shaping new NHS services & the latest in Research April 26th 2012—The BBS Medical Advisory Board was launched. Chairman Professor Nick Bishop of Sheffield University and Children’s Hospital welcomed all to the first meeting. The grouping included a prestigious list of the best in OI in the UK today. The board discussed endorsement of much needed BBS medical fact sheets and how to ensure the board continually has a good spread of medical professionals. There was unanimous consensus to supply the BBS with a steady stream of board members, speakers and facilitators for conferences and events. Other items discussed involved learning about the latest in research programmes, and the desire from all to keep open the communication channels between the NHS and the BBS and to feed back in from service users themselves. The BBS was represented by CEO Patricia
Left to right: Patricia Osborne, Dr Arundel, Prof Bishop, Dr Burren, Dr Shaw, Prof Ahmed, Front left to right: Dr DeVile, Elaine Walker specialist Nurse and Claire Hill—Physiotherapist. Apologies for this meeting Mr Cole, Mr Duncan and Dr Mughal who aim to be at the next meeting. Observers at the meeting also included Dr Hoegler from Birmingham Children’s Hospital and Dr Arundel. Chris Clark— Occupational Therapist was unavailable for this photograph but is featured in our POINT picture (see Jill Murdoch’s report).
Osborne who confirmed “this is a great opportunity to take part in regular dialogue with medical professionals and that it was exciting that BBS members would have a say in how treatment, research and services being planned would be delivered”. It was also a springboard for increased involvement in research. Chairman Elaine Healey said “I am thrilled it has finally been established— it will be key for BBS members—I am extremely proud”. The full minutes of the meeting will be reported to the Trustees at their July meeting and the minutes will be available thereafter.
Matilda scoops OLIVIER
Kerry has been performing 2 shows a week where she was on stage almost constantly, performing choreography and singing solos. Matilda star Paul Kaye paid tribute to his young co-stars
Cameron Allen was given star status at a recent visit to Rangers — seen above with player Sone Aluko
10 year old Highland boy Cameron Allen decided to fundraise for the Brittle Bone Society by baking and selling lots of yellow cakes and having a sponsored silence where he managed to stay quiet for 3 hours.
KERRY MEETS RONAN KEATING & KIMBERLEY WALSH...
13 year old Kerry Ingram who has OI has won a Best Actress in a Musical Olivier Award — Kerry was reprising her role from the original run of Matilda at the RSC’s home in Stratford-upon-Avon.
RANGERS FOOTBALL SUPPORTERS HELP CAMERON RAISE £5581
Kerry Ingram (3rd from right) at the Olivier Awards
saying “It’s about a young child who’s got strength of character and courage, and you’re witnessing that every night with the children. They’re the heart and soul of the show”. Kerry will next be appearing in a TV ad for Shelter (charity) and she also has a part in the film of Les Miserables which is to be released later this year.
Cameron supports Rangers Football Club and his fundraising inspired hundreds of Rangers fans to support him—he has had a massive 421 donations to his JustGiving page and raised £5581 so far. The local minister came in dressed all in yellow to count him down for the last few minutes. When his time was up, it took him around 30 seconds to actually speak! 1
FROM YOUR CEO
Reflecting on my journey over the past 2 and a half years, I am proud the progress the BBS is making.
MAB
of
Tell us how we can continue to remain relevant to you? See our surveymonkey (questionnaires) on our strategic plan, on membership specificially and on NHS scope of services facebook or in this newsletter—take a look at page 6 and please let us know? (read more from Patricia on page 6)
Patricia Osborne
We have established our Medical Advisory Board. Staffed by the very best in the field of OI today, and headed up by Professor Nick Bishop of Sheffield University and Children’s Hospital.
Awareness & Profile
We gained national television coverage with the BBC, featured on BBC Children in Need and had a documentary filmed, and broadcast a BBC Radio 4 Charity Appeal. Our grass roots members are embracing so many events, and World Wishbone Day this year has been outstanding. Uptake in marathons and other events is at an all time high! So Thank you everybody—all our supporters and amazing fundraisers.
Royal Patronage
We can’t say too much as nothing is actually confirmed—but we remain ever hopeful that there is an announcement due very soon. Watch this space...
Support that fits your needs!
Our UK wide Support Worker’s post is now part funded by the BBC Children in Need, Lloyds TSB and the Hugh Fraser Charitable Trust. Our future plans will extend the reach of our support services—and this is where we need YOUR help.
Conference
The Imperial Hotel, Blackpool, 21st - 23rd September 2012
RARE DISEASE UK & GENETIC ALLIANCE
We submitted our response to the UK Parliament’s policy consultation on Rare Disease in the UK. We are also looking at the type of NHS services that will accommodate members with OI.
BBS GETS ITS OWN DWP AMBASSADOR
In the charity’s 46 years history we can’t find any trace of application for funding to the UK Government. We are shaping plans to apply for financial support. During this process our own Ambassador has been assigned to work with us. An encouraging step and we will keep you informed of progress.
PARLIAMENTARY MUSCULOSKELETAL GROUP
Scottish Parliament We attended a meeting of this group on 27th June and heard discussion and presentations about treatment of RA (rheumatoid arthritis) from various groups, and representatives from ARMA. We have raised the focus for May 6th to be recognised as World OI day and we are investigating how we may help this be more widely known. Prof Faisal Ahmed from Yorkhill Children’s Hospital is due to speak at the next committee meeting (24th October) and is a member of our medical advisory board.
Early Bird Offer available until 16th July 2012 (all prices are per adult, 15 yrs +)
Standard Costs from 17th July 2012 (all prices are per adult, 15 yrs +)
All prices include VAT at current rate of 20%
BBS Members Price per person
Non-Members Price per person
BBS Members Price per person
Non-Members Price per person
Full weekend package (single occupancy)
£230
£250
£245
£265
Full weekend package (double/twin occupancy, based on two people sharing)
£180
£200
£195
£215
2 days (Sat/Sun) with Saturday night accommodation (single occupancy) Includes celebration dinner on Saturday evening.
£139
£159
£154
£174
2 days (Sat/Sun) with Saturday night accommodation (double/twin occupancy, based on 2 people sharing) Includes celebration dinner on Saturday evening.
£114
£134
£129
£149
1 day (Saturday) with Friday night accommodation (single occupancy) Includes group dinner on Friday evening.
£116
£136
£131
£151
1 day (Saturday) with Friday night accommodation (double/twin occupancy, based on 2 people sharing) Includes group dinner on Friday evening.
£91
£111
£106
£126
1 day (Sunday) with Saturday night accommodation (single occupancy) Includes celebration dinner on Saturday evening.
£114
£134
£129
£149
1 day (Sunday) with Saturday night accommodation (double/twin occupancy, based on 2 people sharing) Includes celebration dinner on Saturday evening.
£89
£109
£104
£124
Day delegate only for 2 days (Saturday & Sunday) Includes access to exhibition area, conference & workshop sessions plus a buffet lunch (per person).
£48
£68
£63
£83
Day delegate only for 1 day (Saturday) Includes access to exhibition area, conference & workshop sessions plus a buffet lunch (per person).
£25
£45
£40
£60
Day delegate only for 1 day (Sunday) Includes access to exhibition area, conference & workshop sessions plus a buffet lunch (per person).
£23
£43
£38
£58
Children between 5–15 (Full weekend) For day rates contact the office.
£49
£49
£49
£49
2
BBS FUNDRAISING THANKS UK WIDE
Niamh O’Brien and her daughters.
Irish coffee and tea
Three Irish members held Brittle Bone Society tea parties around Wishbone Day as a way of Fundraising and raising awareness. Niamh O’Brien held a tea party in her home in Galway which was attended by 150 people “It was the first event we held in our home for Lucy so I think a lot of friends and family wanted to show their support” and raised 2000 euros. Fantastic effort.
Melek Erceri
Lauren Cleare’s tea party at her home in Cork raised 600 euros and will now be an annual event and Helen Lehane’s Rochestown Park Hotel coffee morning raised 1700 euros. Amazing!
Following in Star’s footsteps
8 year old Melek Erceri was so inspired by Star Healey’s Eiffel Tower climb that she persuaded her Dad to take her to France. On 23rd April 2012 Melek left home in Essex travelled to Paris, climbed the Tower and all in just under 17 hours in aid of The Brittle Bone Society. £985 raised. Inspirational!
Louie and Millie Vincent
Schooltime Jazz concert
Tasha Fretwell organised a Jazz concert at her school and raised £666. Her classmate Alice Marshall had a stall selling BBS merchandise at the concert and held a dress down day raising a further £130. Thank you.
BBS Cakes sale
Louie Vincent’s school held a cake sale — the school had 1500 fairycakes to sell as every child took part. “It was so lovely to see, the kids thoroughly enjoyed making the cake and the mums got competitive” the school raised over £300. Louie’s Mum and Dad are both running in the British London 10k race on 8th July 2012. Sponsor them at www.justgiving.com/KatieandHayden-Vincent Great effort!
Superheroes win £3,904
David Errington and six friends aka Captain America, Mr Incredible, Spiderman, Batman, Kick Ass, Wonder Woman and Supergirl took part in the Reading half marathon and raised a whopping £3904 despite Batman having a sore knee on the day. Thanks from all at the BBS.
David Errington: Captain America, Mark Drummond: Mr Incredible, Graham Mallion: Spiderman, Adrian Lugg: Batman, Matt Childe: Kick Ass, Clare Allen: Wonder Woman and Frederique Barucki: Supergirl
Wheelchair weekend
Megan Elliot used her friend Star’s wheelchair from 4pm on 4th May until 4pm on 6th May and has raised £241 including gift aid. Megan told us “I will be going shopping, to the cinema, bowling etc to try and raise as much money as I can for the Brittle Bone Society. My reason for doing this is because my best friend, Star Healey, was born with Osteogenisis Imperfecta and has broken 45 bones. I want to raise money so that the Brittle Bone Society can continue to help people like my best friend.” Brilliant!
Megan Elliot (right) and Star Healey
3
MORE FUNDRAISING THANKS Running for the BBS
Diary dates BBS events 8th July 2012 British 10k London
Mark O’Connell
Mark O’Connell’s Barcelona run on 25th March raised £455 (pictured top right). Tes Ali ran the Greater Manchester Marathon on 29th April and has raised an amazing £3210. Tes told us “I did survive it. The weather was atrocious—in the windswept, cold and rainlashed streets of Greater Manchester there was no let up. The last 3.2 miles were the worst and seemingly never-ending but finish I did.” (pictured in emergency blanket).
Marathons
Tes Ali
Katie Siegler
We had 2 runners in in the Brighton Marathon; Katie Siegler raised £2305 and Chris Marston (seen pictured on a training run) £2328
We have a team of 24, our largest ever, for the British 10k. They will join 25,000 others on 8 July 2012 to race past some of London’s most iconic landmarks, This is just 19 days before the start of the Olympics and they will follow part of the Olympic marathon course. Haileybury College, a school in Hertfordshire which has chosen us as one of its charities of the year, has a team of 5 sixth formers including Ben Phillips, the elder son of our Trustee John. They will be joined by two of John’s colleagues from the law firm Jones Day. www.justgiving.com/ BrittleBoneSocietyHaileybury10k John Clapcott has once again—this year put together a team of 15 runners from West Sussex. www.justgiving.com/BBSLondon10K
Swimming a mile for the BBS
Chris Marston
Roisin Black John Clapcott and friends
London Marathon BBS Team £7,329 raised so far!
Big thanks to Nic Sheldrake, Duncan Sykes (raised £1,400) and Daniel Hunt (£1,131) for their fabulous achievement at the London Marathon. Nic said “The run was a great experience and the only time I was conscious of my own pace was when the Rhino came past me and disappeared into the distance! Thank you for the opportunity to run for the charity and for your help throughout.”
10k John Phillips team
29th October 2012 Dublin Date Daniel Hunt
Duncan Sykes
Alan Ford
Alan Ford climbed to the top of Mount Snowdon on crutches—he raised £2000. Having battled serious weather Alan managed the task and returned safely.
We need 6 runners to take part in the 31st year of the Dublin Marathon, through the historic Georgian streets of Dublin. Ireland’s capital city Dublin is only an hour by air from most U.K. and European cities, and half of the expected 10,000 entrants will be made up of overseas runners, many of whom will be returning to sample Irish hospitality once more. It is known as The Friendly Marathon — The reaction of many thousands of spectators lining the city streets for the event has been responsible for the success of the marathon.
21st April 2013 London Marathon
Nic Sheldrake
Nic Sheldrake pictured receiving a cheque for £1500 from his employers Hayes and Storr which makes his total a staggering £4,798. Alan descending Mount Snowdon
4
Punjabi Wolves Supporters Club
We told you we were one of a few charities chosen by the Punjabi Wolves Supporters Club and we have been updating you on their exploits on Facebook. Please keep watching Facebook for the latest events they are getting involved in. (June 2012). www.charitygiving.co.uk/punjabiwolves
TRUSTS Supporting the work of the BBS
Roisin Black completed the 2012 Ignis Asset Management Woman’s 10k despite having injured her ankle and raised £376 (Roisin wearing pink)
A 7 year girl who has had 13 fractures has swum a mile in aid of the Brittle Bone Society and raised £2145.
PUNJABI WOLVES CYCLE FOR BBS
Nic Sheldrake
We are already anticipating BBS runners for this. We have secured 3 places so please get in touch if you would like to take part.
We want to acknowledge just some of the Trusts who have been supportive in the past few months, here are a sample of a few we wanted to highlight with our thanks: Tay Charitable Trust – £500 PM Ireland Charitable Trust – £500 Gordon Fraser Charitable Trust – £800 D’Oyly Carte Charitable Trust – for Volunteer Support Group Programme – £3000 Moffat Charitable Trust – for Volunteer Support Programme – £1500 Goldsmiths Company – £5000 John Ellerman Foundation £15,000 for 2 years. Garfield Weston Foundation – £10,000 Sir Jules Thorn – £750 Talteg – £500 Our full list of acknowledgements will be in the Annual Review.
The Next BBS Ambassador The Trustee board will elect another ambassador to represent the work of our small but growing UK Charity. We will approach possible candidates in advance to advise them what the role entails and what is expected of our ambassadors. It’s crucial—that as we build our profile and raise awareness about Osteogenesis Imperfecta, we seize every opportunity we can to show the Society in the best possible light. Where possible the ambassador will recognize opportunities to mention the name of the Charity and if possible secure any suitable opportunities for appropriate exposure and secure sponsorship and or fundraising opportunities. Who will we select for 2013?
5
FROM YOUR CHAIRMAN
Trustees get set for election, support programmes roll out—visiting Northern Ireland and Republic of Ireland, a wonderful Wishbone day success & much more...
(continued from page 2)
MAB and BPABG
Elaine Healey
I am so pleased our MAB is up and running, our profile continues to soar, our new support programmes are ready to launch! Wishbone day was a huge success gaining awareness and raising over £16k— we finally visited Ireland (Dublin) on 22nd June and met with parents from the Republic, to confirm our continued support. I do hope you take part in our surveys and consider lending your support and consider becoming an area co-ordinator.
Trustee Elections
A number of trustees will be coming to the end of their term of office this year and I would like to thank each of them for all their hard work and commitment to furthering the objectives and survival of the BBS. Trustee elections will take place at this year’s Annual Conference; if you are considering applying please make your interest known to the BBS and a pack will be sent out to you. For more information visit www.brittlebone.org Sheena Moreland’s resignation earlier this year left me with an enormous hole to fill, there would never be another Sheena, and I miss her terribly. I would also like to thank John Phillips for taking on this extra responsibility as the Society’s Honorary Secretary. Those Trustees whose terms of office come to an end are pictured left: Top to bottom: Elaine Healey, Sam Renke, Simon Mckeown, Catherine Potterton and Yvonne Grant. Of course we are immensely grateful for the work carried out by Sheena Moreland (who would also be standing down this year) and who retired early, from her role as Honorary Officer. At our last Trustee meeting Trustees agreed unanimously that John Phillips Trustee take on this honorary position. The need for legal input is a requirement of the board and is handled expertly by John.
Sam Renke
I was honoured to attend our first MAB meeting as your representative. It was also of great interest to attend the BPABG (British Paediatric & Adolescent Bone Group) whilst at Sheffield. I learned much of the dilemmas facing healthcare professionals, how dedicated they are to their work and how fortunate we are to have their support and commitment. It was also a great opportunity to meet more healthcare specialists and network with them to talk about the important work we do, and engage potential speakers for our events.
We thought you might like to see a few pictures of the fun we all had at last year’s event.
Support that meets your needs!
Funders are happy to approve our new support workers programme. The full roll out of this is imminent and I hope you apply to become a BBS area co-ordinator. We fully commit to work with you, help train you; working together we can provide better support to our growing list of members across the UK. Our AGM this year is Blackpool—The Imperial Hotel with some information in the enclosed leaflet. If you want to find out more —contact the office. We are looking forward to seeing everybody in Blackpool weekend of 21st September. Also If you haven’t attended Conference— we offer financial support to make sure families get the chance to attend.
Wheelchairs and Equipment
It’s important we continue to support equipment needs and we spent £76k on assisting people with wheelchairs last year, with that figure set to rise this year. Simon Mckeown
Strategic plan
Our next session with the Pilotlight team aims to look in detail at our strategic plan. As reported in the last newsletter, we will launch a full consultation on the intended strategic plan at our Annual Conference. We need your input; please let me know your thoughts about the work we do. From myself and all the staff and volunteers at HQ we would like to wish you all a fantastic summer. Catherine Potterton
Government Consults, BBS Gets Involved Yvonne Grant
If you would like to consider becoming a Trustee then get in touch with the office and request the information pack. (Tel 01382 204446). On behalf of the Trustees and myself I would like to wish you all a wonderful summer.
NHS scope survey
Government Consultation and the BBS taking part... We have held a number of positive meetings with members of the UK Government to have the views of the BBS taken seriously, especially in the areas of transition and adult services. We are now taking part in policy consultation about things that will affect our members now and in the future. We are offering up comment about NHS service provision and have polled members about aspirations in the workplace with more work on this to do. We will be publishing questions about NHS Scope of service survey on our website soon. www.brittlebone.org
6
Memories of BBS AGM and Conference Loughborough 2011
Here’s to our AGM and Conference Blackpool 2012
Breaking through... Branching out—An exciting conference programme and as ever we are keen to offer help to families who haven’t attended previously. If you would like to attend and need assistance then contact Coreen on 01382 204446. 7
2012 MANCHESTER
£16,500 of fundraising achieved for people with OI. Thank you across the UK and Republic of Ireland — from the BBS... for putting OI on the map.
COUNTY DONEGAL
CORK
DEVON
GALWAY
LONDON
PERTH
STOKE ON TRENT
WIGAN 8
9
Paul Noble, MBE
Paralympic Games The London 2012 Paralympic Games will be the most accessible and inclusive games to date. They will foster equality of opportunity for disabled people to participate in sports and other areas of life. Channel 4 will broadcast 150 hours of Games coverage and at least half the presenters will be disabled journalists. The BBS VOICE youth event had the chance to secure motivational speaker and broadcaster Paul Noble (who has OI) for their recent event. Coverage at the 2012 Paralympics aquatics centre will include Paul Noble, Bob Ballard, Giles Long and Karen Pickering.
Paralympic Record Paul Noble New York 1984
1 Silver: 4x50m Freestyle Relay 1 Bronze: 4x50m Medley Relay
Seoul 1988
3 Gold: 100m Butterfly, 4x100m Freestyle Relay, 4x100m Medley Relay 4 Silver: 100m Freestyle, 400m Freestyle, 100m Backstroke, 200m Individual Medley
Barcelona 1992
1 Gold: 200m Individual Medley 2 Silver: 400m Freestyle, 100m Breaststroke 1 Bronze: 100m Butterfly
Atlanta 1996
1 Silver: 4x100m Medley Relay
Sydney 2000
1 Silver: 4x100 Medley Relay 10
More Olympic Torchbearers
BBS SCHOOL REPORT CARD
We learned member Harry Bryant from Tenterden has also been chosen to carry the Olympic Torch. Harry’s grandfather was an award winning BBS fundraiser.
Queen Elizabeth’s Grammar School, Horncastle raised £796 at a jazz concert and sale of BBS merchandise. QEGS students marked Wishbone Day 2012 — on May 6 — by wearing something yellow to school.
Determined to live life to the full, Harry took up dance at school and took part in several tours abroad. Harry completed an A level in PE and has worked as a coach for Chelsea Football Club’s Foundation. There Harry coached and inspired youngsters in their sports and went into schools to talk about fitness and health and exercise. Harry said: “To be one of the 8,000 people chosen to carry the torch is such an honour for me, and to be the first person named for the torch relay of Faversham is Harry Bryant just fantastic news”.
Sport and Media Jack Binstead BBS Ambassador, has been very busy acting on a BBC production of a new comedy series. Jack has been jetting off to Switzerland and other exotic places... and on the sporting front achieved a new personal best in each event, coming 2nd in the 400m heat. Currently Jack is training for a race in July and as ever we wish our BBS ambassador lots of Jack Binstead BBS luck.
Family Day Organised by Yorkhill Children’s Hospital October 2012 Look out for details of a repeat event to be held by Yorkhill Children’s Hospital. We shall post updates on Facebook and our website nearer the time.
Lympstone Pre School and Lympstone C of E Primary School. Preschool had a whole week of yellow fun and raised £30 and the Primary school dressed in yellow and raised £207. Denfield Primary School dressed in yellow and raised £390. Radlett Preparatory School held a huge cake sale and raised £293. Northwood and Broom community school celebrated Wishbone Day, with the whole school wearing yellow, yellow fancy dress, selling cup cakes and having special assemblies and activities all about OI. It was lovely to see all the support and awareness raising, and funds gained totalled £312. Burleigh Hill Pre School took part in Wishbone Day events and raised £21. Stokesley School raised £260 from a wheelchair for the day event. Dean C of E School, Workington, Cumbria raised £275 from Lexi Mills completing a sponsored 20 laps in her wheelchair.
BBS FUNDRAISING TIPS
Contact christine@brittlebone.org to find out more. Bone Idle Day. Choose a day to do nothing.
BBS Goes to Dublin
Amy Rubens (right) meets Paralympian Jordanne Whiley
Paralympic Gold A Realistic Target with luck from all at the BBS
BBS member Amy Rubens, aged 10, got a chance to test her journalistic skills recently – securing an interview with GB Paralympic athlete and Wheelchair Tennis Player Jordanne Whiley. With thanks to the Lawn Tennis Association who helped arrange the interview at the National Tennis Centre near Wimbledon. Jordanne Whiley aged 20 is ranked 12th in the world for singles and plays tennis in doubles with her partner Lucy Shuker ranked 13th for singles.
PARTNER
Jordanne and Lucy met when they were both very young and they aim to get into the top eight by the time the Paralympics start so they get seeded.
ENCOURAGED TO PLAY
Jordanne was diagnosed with OI at birth and was encouraged to play Wheelchair Tennis by her father Keith, who was a bronze medalist in the 100m L3 at the 1984 New York Paralympic Games.
BONE DENSITY
Jordanne was born in 1992 and has not had any breaks for years. Thanks to operations and treatments, plus care with her diet Jordanne’s bone density has improved. Jordanne’s OI affects her legs more than her upper body.
TRAINING REGIME
Jordanne trains three days a week for two hours a day; however, with the Olympics looming her schedule will reach around five hours a day. Jordanne is sponsored by the Tennis Foundation and Cadburys alongside Rebecca Adlington.
Chairman Elaine Healey, CEO Patricia Osborne and Support Worker Jill Murdoch travelled to Dublin for this Left to Right, standing: Patricia much anticipated event Osborne, Dr Arundel, Prof Bishop, Jill Murdoch, Claire Hill, Elaine to finally meet with BBS Walker, Dr Niamh O’Brien and supporters. Our Northern Liz Knowles. Seated: Lesley-Ann Ireland Ambassador Lesley Starrett, Elaine Healey and Dr Ann Starret, was also part McDonnell. of our delegation. We had the opportunity to forge new links, re-affirm our commitment to Irish families. Patricia held several discussions with Dr McDonnell who organised the best sharing practice event, and with Professor Bishop who brought his team to the conference to talk to the 50 or so healthcare professionals at the Herbert Park Hotel. The challenges around addressing service provision in this part of the world is difficult but this visit was the BBS taking a first and important step. Chairman Elaine Healey and Patricia Osborne are already setting out a plan with Irish members to scope out our contribution in the road ahead to work towards better services for people in the Republic of Ireland.
TOUCHBASE e-zine DWP
Some DWP updates we thought would be of interest
Migration to Universal Credit
Universal Credit will go live in October 2013. Universal Credit will be introduced in one district per region in October 2013 and then rolled out to the remaining districts. By mid 2014 all new benefit claims for those in and out of work will be for Universal Credit. The migration of existing claimants to Universal Credit will take place between 2013 and 2017. More details will be available in the summer.
Youth Contract
Wage incentives can be claimed by employers who employ an 18-to-24 year old who is taking part in the Work Programme. DWP will pay the employer £2,275 if a young person is recruited into full-time work and is still in employment after 26 weeks. A part-time rate is also available for when a young person is working between 16 and 29 hours a week.
Employment and Support Allowance claimant journey
Have a clear out; hold a car boot sale.
Jordanne was studying biology but put that on hold to focus on tennis and is also currently learning languages. After the games are over’ Jordanne hopes to become a forensic scientist.
An Employment and Support Allowance (ESA) claimant journey information pack is now available on the DWP website. The pack is a support tool for customer representative groups to use when helping ESA claimants. It sets out what will happen for a new claim to ESA from the initial contact with DWP through to the end of a claim.
Can collections—ask your local shop to stock a collection can for the BBS.
Factsheet On Athletes & Their Wheelchairs
Benefit cap
Have a day in a wheelchair.
Ask your employer to support us through PAYE or by sponsoring the charity.
A FUTURE IN SCIENCE
Paralympic Athlete’s Wheelchairs weigh approximately 5kg. Regular Wheelchairs weigh approximately 18kg. Specialised Chairs can cost around £3,500, Paralympians / Wheelchair Athletes – have chairs customised for them. Customised Chairs can last circa five years.
In May 2012, DWP wrote to all claimants it believes will potentially be affected by the benefit cap, which will be introduced in April 2013. The letters told claimants that they may be affected by the change. 11
Talking to Our Members Membership survey
What do you think your membership payment represents? Would you like to see more conferences? Should we print more newsletters or fewer? What about employment opportunities—what has been your experience and is there anything we can do to support you better? Would you be prepared to pay a little extra to support the work of your charity? Contact the office 01382 204446 and we will post one out to you. (This survey will be on our website soon, keep checking).
Saltire Awards Scotland & V Inspired for England The BBS is getting behind two great projects for volunteers wanting to fundraise. If you are between 16 and 25 and would like to gain a recognised certificate for time spent fundraising or volunteering for the BBS please contact Coreen on 01382 204446 or email at coreen@brittlebone.org You can also download information direct from websites: http://vinspired. com and www.saltireawards.org.uk
Birmingham Children’s Hospital Coffee Morning Some young OI patients enjoyed some craft activities at a recent Coffee Morning held in the Education Department at Birmingham Children’s Hospital. There were talks from Consultants Dr Nick Shaw and Dr Wolfgang Hogler on the recent developments in the service and the Vibration Plate Study which will soon be starting. After the talk the children and their parents were invited to try out the Vibration Plate for themselves. Parents and families were also invited to feedback about the service and make suggestions about anything which could improve. With increased funding and more staff it is hoped that the team will start doing some groups especially with children going from junior to senior school and also to improve the transition process for all children and young people for when they leave the children’s hospital and go on to adult services.
Volunteer Support Group Coordinator Opportunity
Factsheets
Would you like to do something worthwhile with your spare time and at the same time help those with OI? Could you help us to spread the word about our work in your local community increasing awareness of and promoting living successfully with OI? And help raise money for a good cause and make a real positive impact locally and nationally? The Brittle Bone Society is currently building local Support Groups across the UK to help us reach and support more people with OI. We need proactive, enthusiastic volunteers to lead these groups. We’ll support you with the setup of the group, including training and be there to provide advice and materials going forward.
How will this actually work?
Support groups can be run as formally or informally as you want. We just need your commitment to support us in your local community. We’d love you to plan and run at least two meetings each year.
We’ll need you to:
• have an enthusiastic and proactive approach • have great ideas and the ability to put them into action • have good networks in your local area or a desire to get to know more local people • have great communication skills If you are interested in this volunteering opportunity please contact Coreen Kelday at coreen@brittlebone.org or on 01382 204446 for more information.
BBS Strategic Plan Survey Help us with our all important consultation for strategic planning. You can have your say by simply emailing bbs@brittlebone.org your answers to the following or you can telephone the office to arrange to have your comments taken down (anonymously if you wish). Deadline Saturday 21st July 2012 Please tell us if you are a volunteer, board member, ordinary member, stakeholder or supporter. Then answer below: Thanks in advance! 1. 2. 3. 4.
What do you believe the core purpose of BBS to be? How would you define success for BBS? What will the BBS look like in 5 years time? Given that finance is limited, what would be your top three priorities for the BBS? 5. What do you believe the BBS’s three key challenges to achieving its purpose are? Or you can go to www.surveymonkey.com/s/HM7VDY8 12
which I am sure you will agree is exciting for both the charity and for those living with OI across the UK and Ireland.
Jill Murdoch pictured with the ever growing POINT support team at Sheffield Children’s Hospital. (Patricia Osborne pictured far right).
Support Group Programme By Jill Murdoch
Amongst this year’s conference planning, meetings with our new Medical Advisory Board and the POINT team, production of new and up to date factsheets as well as many other things I wanted to assure you we are still working hard on the local Support Group programme. Christine our Fundraising Officer is beavering away to ensure funding is gained to support this exciting project. Myself and Office Co-ordinator Coreen are developing policies and procedures to ensure all aspects of running our new groups are covered, presented in easy to follow steps and comply with appropriate cover for insurance etc. The next stage will be developing our training course modules. Anyone interested in the role of Volunteer Support Group Coordinator will be fully trained and supported to coordinate the group in their area. Each co-ordinator will be equipped with all the knowledge and advice they need to feel qualified to manage these groups. We are advertising here in the BBS Newsletter for those interested in the role to get in touch and complete a short application form. What will follow is a short informal telephone “interview” with one of the BBS team so that you fully understand the role and for us to learn a bit more about you and the time commitment you can offer and anything else that is relevant. Those who are interested will be invited to attend a training course which will cover all aspects of running a group – from sourcing a venue, ideas of agenda items for meetings, raising awareness of OI, the BBS and your group locally, dealing with media, finance, fundraising etc. Following the training each coordinator will then be ready to go ahead and get local groups up and running. The dates location and venue for the first training course are still to be confirmed and will be based upon the interest we receive from those wishing to take on the coordinator role. I want to take this opportunity to again thank those who have shown interest in this exciting new programme and for to those who took part in our early consultation events in Jan, Feb and March of this year. We are now at a stage where having these groups up and running by late summer is a reality
Following the inaugural meeting of the BBS Medical Advisory Board 6 factsheets are now with the MAB for review. These factsheets are: • General Overview of OI • Bisphosphonate Treatment of OI • Adults with OI • Genetics of OI • Hearing Loss and OI • Dental Care and OI A further 3 factsheets are currently being reviewed and updated by POINT: • New-born Babies with OI • Advice for Primary Schools • Advice for Secondary Schools These Factsheets will be available via the BBS website within the coming weeks. If you have any suggestions of topics for information sheets which would be important to your and living with OI please let us know.
POINT
I attended POINT on 27th April 2012 at Sheffield Children’s Hospital. The main topics of discussion at this meeting were the new BBS local Support Group Programme, BBS Factsheets and a new concept of producing a “BBS – Your Guide To OI”. The entire team were supportive of all three topics. The “BBS – Your Guide to OI” is a project we are at the very early stages of looking into. The basic concept is that we would provide folders and basic inserts including relevant BBS factsheets to each of our members and new members going forward as part of our membership scheme. Members could then use this to store all letters, information and documents relevant to their OI in an easy to access and carry folder. What we need to research is what size of folder would work best for our members i.e. A4 so that letters fit in easily vs a smaller A5 size which would fit in your handbag? Let us know your thoughts! Whilst in Sheffield I was welcomed for a visit to the Genetics Lab for a full tour and meeting with the lead of the service Dr Ann Dalton. This was a very informative visit and gave me a more in-depth understanding of the techniques and processes involved in genetic diagnosis of OI. I was also able to take the opportunity to visit with two families who were on the ward in Sheffield receiving their pamidronate infusions and observe as an OT assessment was carried out. Following on from the POINT meeting, I attended, along with Patricia the bi-annual BPABG (British Paediatric and Adolescent Bone Group) meeting which was extremely educational and allowed us to meet with new members of the 5 highly specialist level 3 centres for treatment of children with OI in the UK. 13
VOICE 2012 1 venue + 3 days + 16 young people with OI + 12 months of planning = a fun filled and informative weekend enjoyed by all! A group of 16 young adults aged between 16 and 30 met up at the Hilton Hotel, Edinburgh Airport for our 3rd annual VOICE Youth Event on the weekend of the 13th-15th April 2012. 7 of the delegates were brand new to VOICE and were given the opportunity to attend this year due to the event being held further north. A huge thank you must go to Awards for All who funded VOICE 2012. Delegates were welcomed with a goodie bag filled with lots of Scottish goodies kindly donated by Nairn’s Oatcakes, The Famous Grouse, Strathmore Water, Walkers Shortbread, MacKay’s Jams & Marmalade and the Natural Bag Company. The event was kicked off in style by Paul Noble, MBE a 5 time Paralympic medallist and commentator of the swimming events at the Paralympic Games 2012. The day then continued with talks on Mental Health by Chris O’Sullivan (Mental Health Foundation), Further Education by Jan Gardiner (Disability Service, University of Edinburgh), Genetics by Dr Esther Kinning (Royal Hospital for Sick Children, Yorkhill), Benefits & Welfare Reform by Keith Dryburgh (Citizens Advice Scotland), Relationships by Caroline Bowditch (BBS member and Outsiders Ambassador) and a cookery masterclass by Hilton Chef David Ferguson. On Saturday at lunchtime, our chairman and vice chair, members and Professor Ahmed then got the opportunity to meet friend and supporter of the BBS, Lord McAvoy of Rutherglen. Lord McAvoy spent time hearing about our many projects and chatting informally with delegates and was able to learn more about the work we undertake. An exciting addition to the programme this year was a chance to get out of the hotel for a canal boat trip. This activity was organised by the Seagull Trust who have several wheelchair accessible canal boats. Delegates got some brisk Scottish fresh air and the opportunity to see some of the beautiful Scottish scenery it also opened up the possibilities of taking part in activities which were previously thought of as “out of bounds” for wheelchair users. One delegate said – “This was superb; it broke up the day and was really good. One thing to mention here is that many of us that use electric and manual wheelchairs often don’t think about boats being accessible; this activity showed us all that if you look hard enough there is always something around.” Saturday evening began with a professional photo-shoot by Chris O’Sullivan (www.chrisosullivan.co.uk). This gave the delegates a chance to have professional photographs taken and helped to challenge any issues surrounding self-image and confidence. I am sure you will all agree our delegates look absolutely fabulous! 14
Photos taken by Chris O’Sullivan www.chrisosullivan.co.uk 15
Brittle Bone Society thank Des Kealy
Ways to Help BBS Raise Funds Online Shopping
It’s important we acknowledge, and record thanks to all who support our work; we treasure all the help we receive. Support takes on various forms; it comes Des Kealey in many ways. The staff at the BBS head office, however, are always happy to hear from Des Kealey. Des keeps in touch regularly, and seems to know when to send us a few words of encouragement. So we wanted to say a very big THANK YOU to DES. Des Kealey of Branston near Lincoln has been a fundraiser for the Society since a decade ago when his third grandson died of a severe form of OI. The Society was so responsive that he decided to help them and has, over that period, been instrumental in raising more than £13,000 from raffles and donations.
Every time you shop online thousands of retailers like Amazon, Asda, John Lewis, M&S, Sainsburys, Tesco, E-bay and many more will donate a percentage of your purchase price to us. Simply make your purchases via any of these websites and select the Brittle Bone Society. www.thegivingmachine.co.uk www.giveasyoulive.com www.easyfundraising.org.uk www.yellowmoon.org.uk
Coreen Kelday
Re-cycle
Do you or do you know someone who wants to scrap a car? This company will donate half the scrap value to us. Contact them on 020 0011 1664 or support@giveacar.co.uk To remind you that you can donate your empty ink jets and old mobile phones at www.recycled4charity.co.uk
He has encouraged donations and fundraising from his grandson’s schools and from local RAF bases. In the decade referred to, Des went from 80 to 90 years of age and to quote Des “many of his former ‘peers’ have gone to another place”. He says that he himself has greatly benefitted from the company and friendship of the Staff at “Grant-Paterson House” and has very much enjoyed working closely with them on fundraising ventures helping others. Des has told us that he is most impressed over that period, by the raising of the Society’s profile and by the greatly improved quality of the Society’s written material. He is also impressed by the multitude of fundraising efforts made by members of the Society themselves this ‘self-help’ is laudable and is characteristic of a vibrant Society. Patricia Osborne CEO said “the kind words of encouragement I and the team get from Des always seem to come at the right time. And it’s great to get such positive feedback for the work of our small team at Headquarters.”
Trustee Catherine Potterton meeting Des Kealey at BBS Annual Conference in Loughborough 2011. Des was attending as a guest of honour at lunch with the Chairman, Vice Chair and CEO.
CREDITS Brittle Bone Society
Grant-Paterson House, 30 Guthrie Street, Dundee DD1 5BS contact@brittlebone.org | Tel: 01382 204446
Editor
Patricia Osborne| patricia.osborne@brittlebone.org
Fundraising
Christine Hope | chris@brittlebone.org
Support
Jill Murdoch | jill@brittlebone.org
Sub Editor
Nominations: BBS Annual Awards We are completing the list for this year’s awards but it’s not too late to send in your nominations. Winners like Mildred Price last year. Mildred is keen to hear from anybody who has used stamps. You can send to us direct or to Mrs M Price 57 Mount Pleasant, Swansea, SA1 6EQ. mmprice8@virginmedia.com
Harry Venet, Trustee
Editorial Assistance
Coreen Kelday | coreen@brittlebone.org Annette McIntyre | annette@brittlebone.org
General Enquires
Tel: 01382 204446 | bbs@brittlebone.org Mildred Price
For BBS Nominations—E: info@bbs@brittlebone.org Telephone 01382 204446 or write to BBS, Grant-Paterson House, 30 Guthrie Street, Dundee DD1 1BS. 16
Print & Design
Creative Graffix | hello@creativegraffix.com Registered Charity Nos. England & Wales 272100, Scotland SC010951