The Brittle Bone Society
NEWSLETTER
Supporting people who live with bones that break
Issue No. 103 – Spring 2012
BBC 1 Documentary My Life — Tops £2,000 & BBC Radio 4 Charity Appeal — £8,500 And Rising... TWO stars are born... Samantha & Star — BBC smash hits for the BBS It was only a few months ago that the BBC production company Sixth Sense contacted us to find out if we could help with their plans for filming some interesting stories.
We offered up a few volunteer families and they chose the Healey family. I appreciate it was a pretty intensive time for Elaine, Star and all the family, and we are all so very grateful they shared their life with us, to raise awareness of OI and to help our small charity continue to grow our profile and help our many causes. Star’s target figure of £984 has long since been smashed and is climbing well above £2k. I know Star wants to take on a bigger, tougher
DEAD ON HIS FEET!
Paul Deadman — Cycle Challenge A huge thank you to Paul Deadman our Vietnam to Cambodia cycle athlete. It was such fun to watch Paul’s progress daily on Facebook. I know that many took a real interest in this event and although we love every shape and size of campaign you kindly do for the BBS, every now and again something quite unusual pops up and Paul’s event certainly was outstanding, raising circa £3.5k – We understand Paul has big plans for his next BBS Challenge. Watch this space...
challenge as she discussed recently on ITV’s Daybreak show when interviewed by Kate Garraway, and we are already working towards that with extremely high hopes for the future. You can still donate online at www.justgiving.com/star-healey We are still reading through hundreds of beautiful and very touching letters and emails from the wonderful British public who responded to our BBC Radio 4 Charity Appeal. The day we recorded was so exciting, and I was particularly Trustee Sam Renke recording the BBS Charity proud of Samantha Appeal for Radio 4 Renke, Trustee. The BBC producers were delighted with her style, presence and overall delivery of the touching script – which obviously struck a chord with listeners. £8k and rising, thanks Sam!
VOICE AHOY ALL AGES I do hope as many young people as possible take advantage of attending our VOICE event – now in its third year – and we are excited about unveiling yet another knock-out programme in Edinburgh on the weekend of 13th April for our young members. We haven’t had quite the response we were hoping for in calls to hear what other age groups want to see the BBS organise, but its never too late. Please drop us a note or email bbs@brittlebone.org and we will do our best to meet your needs.
PUNJABI WOLVES ADOPT THE BRITTLE BONE SOCIETY We are delighted to be chosen by a supporters club in the Premier League of English Football, which is a first for the BBS. We thank Gursharan Kaur, a friend and member of our charity, for nominating us. We are keen to get more involved with them, and our Fundraising Officer is working hard to ensure we find out how best we can support them in the months ahead.
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BBS UK POLICY WATCH FULFILLING POTENTIAL We carried out a number of roadshow events, led by our support worker Jill Murdoch, across the UK promoting pilot ideas for our new outreach support workers programme. We are now assessing our consultation responses. Alongside this, we have managed to squeeze in some excellent consultation debates and feedback sessions on the UK Government policy paper called ‘Fulfilling Potential’. We submitted our full response on 9th March and attended a follow up meeting with DWP. Updates to follow — watch this space.
UK PARLIAMENTARY MEETING Our charity were involved in a round table discussion in Scotland involving a number of charities of differing sizes, again feeding back into the UK Government about the challenges people face to realise their aspirations. From this we will embark on a benchmarking visit with the charity SENSE Scotland who support people who are deafblind or disabled. Our Fundraising Officer will visit with their fundraising department and learn some tips on fundraising schemes.
GOVERNMENT CASH FIGHTING TO HOLD ON! We took part in a Scottish Government consultation meeting to discuss and debate new ways of funding for children and young people’s welfare – this was important, especially as this is the only Government grant we receive regularly. The comment we provided called for the grant to continue, that it be supplied for ‘core’ funding and the amount be increased and extended for a longer time-scale – rather than our needing to apply year on year. Our full submission will be available soon and we hope we are successful with this application for financial support. 2
MEDICAL ADVISORY BOARD 2012 TRANSITIONAL SERVICES A REALITY The date has finally been set to hold our first MAB in April this year. The gathering will take place at Sheffield Children’s Hospital and the full list of invited medical representatives will be available on line soon. This is a truly exciting step forward and we will update you on the event. A number of exciting member-only advantages will be announced soon.
If you ever needed a reason to consider membership of the BBS — now is the time to make that commitment. The BBS has been invited to attend the next BPAPG meeting with Professor Bishop and colleagues, as this co-incides with the date of the new MAB. Developing and building our relationships with the centres of excellence is crucial as we plan towards our hopes of achieving a set of ‘Clinical Care Guidelines’ for people with OI. An extremely shortened summary of what that actually means... objectives of clinical care guidelines are to standardize medical care, to raise quality of care, relating to data, prevention, diagnosis, effectiveness, sensitivity, resoluteness, prognosis, dosage, risk/benefits. and outcomes.
Professor Nick Bishop agrees to chair new Medical Advisory Board
2012 AGM AND CONFERENCE We sense a holiday atmosphere!
Having run the last two events at Loughborough, we thought it fair to move our annual event around the country – and so this year we are heading for Blackpool – north west England. We understand booking time off and fitting in with holiday, work, school and other plans are crucial. Keep your diary free from Friday 21st to Sunday 23rd September for a truly unmissable weekend. As before we will be arranging bookings direct from the office. To register please download a registration form from our website which will be available within the next few weeks or call the office to have one sent by post.
UKAPPG – UK ALL PARTY PARLIAMENTARY GROUP BBS Trustee Sam Renke has attended this cross party meeting event in London. The last meeting Sam attended was about cinema access. You can get a copy of the minutes and Sam’s contribution on our website. Keep up to speed with us on the APPG topics going forward – and we assure you we will send a BBS rep whenever possible. It is important to build our profile and contributing at events like this at the UK Parliament are beneficial to our charity. Please get in touch with us, if there are any issues you want to make us aware of for the next meeting.
Trustee Sam Renke
FROM YOUR CHAIRMAN Elaine Healey
I was more than pleased with the finished result of the TV documentary – My Life – my very own Star in a programme recently screened on BBC1. You will forgive me for being proud of my wonderful daughters and the promise they both show in playing their parts and doing their bit for our beloved charity.
BBC TV
The response we have had as a family has been amazing. Paul and I couldn’t be more proud of a daughter, and not forgetting; Tiana is also being tipped for stardom in the broadcasting arena as well.
We know you want us to run stories on our wide and varied membership and supporters out there. Next issue we hope to run a feature about long term supporter Des Kealey.
Fundraiser and Supporter Mr Des Kealey
Olympic Torchbearers Star and Tiana Healey
Ideas wanted!
I remember when staff at HQ sent out a call for recruits for this new CBBC project – and they worked hard to ensure our Charity had the best chance of winning through. I feel certain the fact Star’s special day focussed on her school trip to Paris was a main reason the producers chose to go with Star’s story. I want to thank all the families who stepped forward, it is important that we have the courage to allow people into our lives to see what living with OI is really like. From this one opportunity I know we are growing in strength and if we thought the previous two years have been full of promise, then the next couple of years will see us reach for the stars.
BBC Radio, consultations & Pilotlight
Still on media, well done to Trustee Sam Renke for our Radio 4 Appeal – a tremendous effort, excellent exposure and a truly knockout Hollywood performance from Sam. I know Patricia secured much needed funding to help take the Government consultation sessions out to our members. Our work with Pilotlight continues to move forward and we are all of us learning along the way, looking closely at our budget process, contingency planning, staff training, developing potential of all our staff, volunteers, fundraisers; overall a worthwhile process. We will publish a full report at conference time to let you know what we gained from this experience.
Elections
There will be elections at this year’s AGM and Conference. The number of vacancies required for the board will be announced soon and the current trustees who have completed their current elected term will announce their intentions. Of course we all wish Honorary Secretary, our beloved Sheena Moreland every good wish as Sheena announced she will step down from the Board. An amazing contribution selflessly given and I know many of us will keep in touch with Sheena. As you know we need to keep printing costs down to minimum. Therefore may I ask anybody interested in obtaining nomination forms or any information about becoming a trustee to contact the office. The nomination papers should be ready around May and will be available from our website. The office staff will keep you posted via facebook.
Strategic plan
OI STORIES... BBS friends & supporters
Our next sessions with the Pilotlight team aims to look at Governance. This should all culminate in the complete and final product — our Strategic Plan. We hope to launch this at conference, one year on, but sure it will be well worth the wait.
At the BBS we are really thrilled to announce the confirmation of Torchbearer – Ms Catherine Potterton. Catherine, Trustee of the BBS and a Cambridge graduate is delighted to have been chosen, and understands it’s a really special honour to undertake. We promise to publish pictures including the ‘Torch’ when we have them.
Nominations: BBS Awards
Please don’t forget time is running out for nominations. We will consider any nominations for fundraisers, so long as they reach us by July of this year.
Zero budget & coats of paint
Our cost cutting continues at HQ. To complement the free furniture we were given, I am pleased to say that local Dundee College agreed to send in some apprentice painters to help give our offices a much needed freshen up. It goes without saying we firmly believe that if we had the funds in place, we would do our bit, and gain a competitive quote to help keep local industry ticking over, however times are tough for the coffers of the BBS and every little helps. The young lads have done a terrific job and it helps to work in a bright, tidy environment-it helps focus the mind and keeps our spirits up. Trustees Mark Ross and Yvonne Grant kindly presented BBS volunteer certificates signed by our Chairman Elaine Healey as a small token of our thanks.
BBS ASKED TO SUPPORT MEDICAL OI STUDY DAY IN DUBLIN – DATE IMMINENT We have been in regular contact with Dr Ciara McDonnell who is involved in planning for a much anticipated event which will be held in Dublin on 22nd June (we will be sending out invites soon). The OI study day in Ireland for Health Professionals will also offer a parents information session. Our Charity have been invited to attend. There are plans to attend a Government meeting of the DoH and exciting plans to help in this part of the world. We look forward to being at the event with updates on the support we offer, information on wheelchairs and other services only available from the BBS. 3
BBS: FUNDRAISING HALL OF FAME
Paul Deadman en-route from Vietnam to Cambodia
Ellie with piper at Trisha Mckeown’s Burns night Dinner Dance
Duncan Sykes, London Marathon runner with daughter Charlotte
Becky Whitworth collects cheque at Sheffield Hallam University
Cat, Eddie and Yaz in Glasgow with Billy Boner
Mark O’Connell will run the Barcelona Marathon (Good luck Mark)
Kay Tate’s cake sale
Christopher Carter and daughter Katie after a painful leg wax
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Frankie Lavelle — Dublin Marathon runner
Mark Ross Trustee, with Katie Ramsay’s Dancing Feat
Aimee, Emma, Amy and Gemma at a Band night in Aberdeen
WE NEED YOUR HELP It is more important than ever that I ask you to you to renew your membership and to get involved in fundraising. In 2011 in this financial year, we managed to bring in circa £60k of fundraising which is around £5,000 per month. We hope we can raise more in 2012. Christine Hope, Fundraising Officer and I are currently reviewing all available options to seek out new income streams for the Charity. There are a number of fun ways you can get involved. I would ask you to support us if you can – just get in touch with Christine@brittlebone.org and we will help you. Why not make a start by helping us with our own project for World Awareness day of OI – May 6th Wishbone Day – How will you go Yellow?
MARATHON WATCH London Marathon 2012 — on 22nd April 2012 there will be four people running for the Brittle Bone Society — watch out for them on the TV and go to our website for how to support them. Reading Half Marathon — 1st April — we have a team of Superheroes running in fancy dress who have already raised over £1500 — www.justgiving.com/superheroes7 We also have runners in the Barcelona Marathon on 25th March, the Brighton Marathon on 15th April, the Greater Manchester Marathon on 29th April, the Great Manchester Run 20th May and Wales Marathon on 10th June. Alan Ford is climbing Mount Snowdon on crutches on 6th May — www.justgiving.com/Alan-Ford — and he has already raised almost £400. There will be 18 BBS runners taking part in the British 10k London run on 8th July, just 19 days before the Olympics and covering part of the Olympic course. The BBS have 6 spaces in the Dublin Marathon which will be held on the 29th October 2012 — if you are interested in taking part let us know. The BBS offer a huge vote of THANKS to the ten runners who took part in the Dublin Marathon in October last year and raised over £5000. Ciaran McAleer handed a cheque to Jill Murdoch at the Belfast Christmas lunch. Thank you to Coca Cola’s Abbey Well Water and Sheffield Hallam University who raised £1545 from the sale of bottled water. Becky Whitworth collected the cheque. Katie Carter’s Dad deserves a big thank you for going the extra mile when he had his legs waxed to raise £487. Brittle Bone Society Trustee Mark Ross accepted a donation for £525 from the Glencarse children’s dance class – Dancing Feat. Kay Tate’s cake bake £100. A Band night in Aberdeen – £260. Billy Bones in Glasgow – £260. Another successful Gala Dinner from Trisha Mckeown (Burns Night Dinner Dance) £3222. Thank you to everybody from all at the BBS.
HOW YOU CAN GET INVOLVED? Wishbone Day 6th May 2012 How will you go YELLOW on Wishbone Day? 1. 2. 3. 4. 5.
Have a Wishbone Day picnic in a park? Arrange a sponsored yellow mile walk or wheel? Yellow cake bake? Hold a yellow quiz Hold a yellow tea party
Our website has lots of information and help on how you can promote Wishbone Day.
Picnic in the Park in Perth for 6th May
Contact jill@brittlebone.org if you want a poster. Contact christine@brittlebone.org if you would like to hold a similar event in your area.
Bone Idle Day
Choose a day between now and September and raise money by doing nothing. Whoever raises most by 31st August 2012 will win a “OnePiece” Lusekofte – the ultimate relaxation garment – see website for more details.
Have a day in a wheelchair
If you are not usually a wheelchair user – be sponsored to use a wheelchair for a whole day or longer...
Jubilee Party
Hold a party in your garden to celebrate the Jubilee and raise money at the same time.
Car boot sale
Have a clear out, hold a car boot sale and raise money for the BBS
Can collections
Ask you local shops to have a BBS can on their counter Contact christine@brittlebone.org for info on any of the above fundraising and see our website www.brittlebone.org or phone 01382 204446
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OI ACHIEVING IN SPORT
THANKING SHEENA
David Phillipson has OI and accomplished a great deal through Wheelchair Tennis. David competes in International Tennis Federation (ITF) ranked events, to earn world ranking points that will hopefully qualify him to be selected to represent Team GB and compete in the Paralympics. David has a current world ranking of 20 and has been as high as 11.
We were asked to let everyone in the OI community know that Sheena Moreland Honorary Secretary has finally decided to take life a little easier. Sheena has decided to step down from her role as Trustee with immediate effect. Sheena popped into the local office recently with some cakes and good cheer to wish everybody well. Chairman Elaine Healey wanted to tell our readers, “the board remain extremely grateful to Sheena for her long years of service, dedication, devotion and tireless work for the Charity. We will ensure Sheena’s contribution and service is duly recognised but meantime on behalf of all staff and Trustees at this time — we just wanted to say Thank you our dear Sheena”.
In 2012 the Paralympics are being held in London between the 29th August and 9th September 2012. The Wheelchair Tennis event will be played at Eaton Manor within the Olympic Park which has been purpose built for the event. There will also be a test event held from 3rd to 6th May 2012 and tickets can be purchased for the Saturday 5th May 2012.The actual selection for the Paralympics will be made at the end of May, so between now and then David is playing in many tournaments around the world to qualify for The British Open which is a Super Series event, one level below a Grand Slam which is held in Nottingham between 17th and 23rd July 2012.
Jack for 100 METERS Visa London Disability Athletics BBS Ambassador Jack Binstead, has been selected to race 100 metres at the above event hosted at the Olympic stadium as their test event. Well done Jack! Tickets are available at Ticket Master. www.ticketmaster.co.uk/Olympic-Stadium-LondonPrepares-Series-Venue-tickets-London/venue/436545
FESTIVITIES IN BELFAST On 10th December 2011 our Support Worker Jill Murdoch with the assistance of our Northern Irish student volunteer Emma Burns headed over to Belfast to meet with 70 members for a wonderful lunch and get together. A local magician entertained the children and adults alike. Jill then gave members an update on the past year of BBS activities and future plans. Great fun was had by all and the members were delighted to hear about the proposed event to take place later this year in Dublin.
MEMBERSHIP & BANK N Ireland Ambassador Lesley Ann Starret, Jill and Volunteer Emma Burns from Belfast
Office Co-ordinator Coreen Kelday is asking all members to help with BBS record updates, which are being thoroughly reviewed in readiness for our hoped for new database system. Please help us ensure our records are up to date. All our funders ask how many members we have and it’s important our records reflect our work. If you want to discuss your membership status, please don’t hesitate to contact Coreen (you can send Coreen an email or give her a call. 01382 204446 or coreen@ brittlbone.org). Don’t forget our new Bank Details are as follows… Account No: 10479306 Sort Code: 83-50-00
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SUPPORT WORKER’S UPDATE Over several months we have been working to produce a Support Group Programme with an aim to roll out local BBS Support Groups throughout the UK and Ireland. The main aims of this programme will be to provide a sense of community to OI families across their entire lives, increase awareness of OI, promote living successfully with OI and to help families connect with the Brittle Bone Society services and resources. I have met with 4 groups of members in Milton Keynes, Glasgow, Leeds and Galway to consult on how these local support groups will run in practise. These consultations have been invaluable and have armed me with the information and ideas to ensure the BBS Support Group Programme will be a success. At this stage we are looking for volunteers to come forward who are keen to set up a group in their local area. These volunteers will then be given support and training in order to set up and continue to coordinate a BBS Support Group. For more information please contact me on jill@brittlebone.org or give me a call at the office 01382 204446.
Support Group meeting in Leeds supported by Trustee Harry Venet
POINT
I am due to attend my bi-annual meeting with the Paediatric Osteogenesis Imperfecta National Team (POINT) at the end of April. This time the meeting will be taking place at Sheffield Children’s Hospital and topics of discussion will include updated information sheets, the BBS Support Group Programme and how POINT will work alongside the new Medical Advisory Board.
Glasgow welcomes Jill — alongside Trustee Yvonne Grant
VOICE
Our annual youth conference is almost upon us. This year the event is being held at the Hilton Hotel, Edinburgh Airport on the weekend of 13th-15th April 2012. This year’s event has attracted many young members who have previously been unable to attend VOICE due to the distance involved in travelling to our 2010 and 2011 locations of Telford and Reading. We have so far been overwhelmed by the support received in the form of raffle prizes and resources for the delegates. A full update will be available on the website after the event and in the next BBS newsletter.
OI STORIES...
A short life story of Tracey (A brittle bone child) We are grateful to receive so many personal accounts of people who live with OI, sometimes the stories are uplifting, fun, a battle against the odds and triumph, but sometimes they can be very moving. We received a beautiful poem by Mr Karl Kavanagh who kindly gave his permission to publish his heartfelt verse about a much loved child. You can read this on-line on our website at www.brittlebone.org or contact the office and we will send a paper copy out to you. “We jumped for joy because Jan’s with child, we will be dad and mom. This good event we did not plan. But what a time to come...”
Jill and the OI mums in Galway Southern Ireland
RECYCLE 4 CHARITY.CO.UK AND HELP THE BBS Donate your empty inkjets and old mobile phones to raise £££s for the charity of your choice! Brittle Bone Society have signed up and for every inkjet donated we will receive £1.00 and for each mobile phone we could gain up to £70.
Please visit www.recycled4charity.co.uk 7
BBS TRAVEL TIPS Travelling and holidays should be fun and relaxing and can be with some careful pre-planning. Some top tips when planning to travel are:
Choose the right location/venue.
Use the BBS Facebook page and website to find out where other members have been on holiday; they will be able to provide first hand experiences.
Insurance — Arranging the correct insurance is important.
The BBS have a list of Insurance Companies which members have used in the past. Contact us for more information.
Arrange all transportation well in advance.
Whether travelling by plane, train or car, plan your route and buy tickets well in advance. Inform the company you are travelling with if you will require assistance and give them full information about your needs and any specialist equipment you will be travelling with. Most large companies will have a specialist assistance department.
If you have had good experiences on holiday, when travelling please let the BBS know. We can then share information on suitable hotels, travel companies etc. with other members. Email bbs@brittlebone.org
CREDITS Editor
Patricia Osborne| patricia.osborne@brittlebone.org
Fundraising
Christine Hope | chris@brittlebone.org
Support
Jill Murdoch | jill@brittlebone.org
Sub Editor
Harry Venet, Trustee
Editorial Assistance
Coreen Kelday | coreen@brittlebone.org Annette McIntyre | annette@brittlebone.org
General Enquires
Tel: 01382 204446 | bbs@brittlebone.org
Print & Design
Creative Graffix | hello@creativegraffix.com Registered Charity Nos. England & Wales 272100, Scotland SC010951
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