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The Brittle Bone Society
Newsletter Issue No. 105 – Winter 2012
BBS Blackpool Rocks 2012
Supporting people who live with bones that break
Merry Christmas
A little dash of sunshine, lots of stunning sea views, bracing winds, pleasure beach attractions, donkeys and trams, wonderful bright lights on the seaside promenade. The impressive victorian Imperial hotel played host to our 2012 event. The venue - steeped in olde world charm; with very friendly helpful staff, boasting beautiful spacious public rooms and great food and amenities for all our guests. Whilst arguably not the top venue the BBS has booked to date in terms of accessibility. Most members were satisfied and ready to accept and accommodate. The weekend was much more about members getting together, listening to fantastic keynote speakers, attending one to one sessions, trying a bit of Tai Chi or going to any one of our brilliant workshops and
just being part of a great atmosphere. BBS Chairman Elaine Healey, Vice Chair Toni Potterton and all Trustees and members were welcomed along with CEO Patricia Osborne by the local Deputy Mayor Councillor John Boughton and his wife Deputy Mayoress Jaki Boughton. The weekend programme of fun included a not to be missed kids talent show and dinner with awards presentation. Saturday evening was rounded off with a film of a special address by Professor Nick Bishop of Sheffield University and Childrens Hospital—(Chairman of our new medical advisory board). Saturday’s conference schedule was extensive and concluded with our family dinner in the evening, a glittering awards ceremony; and of course the ever popular disco. We also extend thanks to members for helping us raise £600 from the table top donations on Saturday evening.
Tennis Bronze for Jordanne
Hayleybury school £9331.57 gift
Jordanne Whiley is a world class Wheelchair Tennis player.
We were thrilled to learn last year that Hayleybury school in Hertfordshire had chosen the Brittle Bone Society as one of their charities and we are delighted now to report they have raised in total the huge sum £9331.57
She was 3 times world junior masters winner and national champion 3 times, being the youngest to win at just 14 years old picking up 2 bronze medals, 1 silver and 1 gold from previous World Cups and recently securing a bronze medal at the London Paralympic Games in 2012. Jordanne wanted to win a medal at the Paralympics to show other wheelchair users that professional sport is a realistic career option. ‘Wheelchair Tennis is big in the Paralympics, but in Beijing running and swimming took the publicity,’ she said. ‘If I can medal in London it would show disabled people being in a wheelchair is not the end of the road for them.” Jordanne was encouraged to start playing Wheelchair Tennis by her father Keith, who won a bronze medal in the L3 100m at the 1984 New York Paralympic Games.
We would like to thank all the pupils and staff who helped support their fundraising and in particular Lewis Colson. In addition to all the other events held throughout the year, 5 of their pupils ran in the British London 10k race in July as part of the BBS team. The photo shows the five Hayleybury runners including Ben Phillips, George Hudson, Owen Liggett, Dominic Tivey and Helena Page.
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Punjabi Wolves Masquerade Ball & the BBS 1
Update from your CEO BBS launch successful NEW Local Volunteer Support Groups Dear Members, my apologies for the delay in getting this newsletter out to you, we hope it’s worth the wait. Conference was another hit in Blackpool, we had a summer of fun with the best Paralympics ever, and the BBS were honoured to be invited to attend the opening ceremony in London.
SPORT Already members have been in touch asking how they can explore getting involved in the Commonwealth Games in 2014. We are all proud of the results of the Paralympic Games and already the BBS are in talks to explore sports support.
BBC
Left to right Louise Martin—Chairman of Sportscotland, Baroness Sue Campbell Chairman of UK Sport, Scottish Government Minister for Commonwealth Games and Sport Ms Shona Robison MSP, and John Phillips BBS Secretary and Patricia Osborne CEO
Cameron Allen being interviewed by Bryan Burnett for BBC Radio Scotland—talking about living with OI and the work the BBS do. The interview also included Professor Faisal Ahmed a member of our Medical Advisory Board.
Shortly after Conference the BBC contacted us to ask that we get involved in Children in Need again this year. It’s important we work with and co-operate with these campaigns as they are invaluable supporters of the work we do. Young Cameron Allen was a smash hit on the Bryan Burnett show and from that we attended a reception at BBC Headquarters, where we made more significant contacts to help our profile.
Next year’s AGM and Conference It’s not too soon to start planning where we go in 2013. What should be our theme? I would love to hear from anyone who has any comments or suggestions. Patricia.osborne@brittlebone.org
Happy Christmas, Patricia
Punjabi Wolves meet BBS Chairman The Punjabi Wolves held a spectacular Masquerade Ball in September which was attended by Chairman Elaine Healey and Gursharan Kaur Elaine said: “The event added to their already significant fundraising for their 5 chosen charities which include the Brittle Bone Society. Earlier in the year a team cycled and “rick-shawed” all the way down to London in time for the Diamond Jubilee celebrations. They have already raised over £50,000 altogether for their chosen charities!”
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A huge thank you to all the BBS members who have been in touch, registered interest and attended our sessions…. We are delighted to announce our first three Support Groups are up and running. The first of our workshops was held in London on the 17th November, and we can confirm our Area Co-ordinators are Angela Grundy and Diane Crookham-Burke for the North West Diane Crookham-Burke, of England, Maureen Groom for Birmingham Preston and Kat Watkins for Mid-Wales. Their contact details will shortly be on our website. The second of our workshops is to be held on the 15th December in Belfast for members from Scotland, Northern Ireland and Republic of Ireland. Watch this space for our next group of Area Co-ordinators to be announced. The first step in starting a new group is finding out how many people are interested in joining and what they are looking for in a group. I would be most grateful if you could complete and return the enclosed survey, to allow us to put you in touch with your local contact, or alternatively you will find the survey at www.brittlebone.org. Our support group aims are to provide support, information, networking and informal gatherings within the local OI community. If you or someone you know would enjoy supporting local people affected by OI we would love to hear from you. There are a variety of roles in these groups and the more volunteers we have the more support we can offer. For any questions contact the office and speak to Coreen Kelday on 01382 204446 who will be pleased to help.
Angela Grundy, Preston
BBS Fundraising hall of FAME This has been a super year for great fundraising events and I would like to thank everyone who has worked so hard to raise funds in such inventive ways. I would especially like to congratulate Gertie and John Farmery, of the Longridge Branch on the group’s forthcoming 40th anniversary 9th January 2013. Gertie was one of the founding members and has worked tirelessly with the other members since 1973, to raise over £80,000 for the BBS. Everybody would like to send their thanks and congratulations to Gertie and John and all who have helped and worked so hard to reach this amazing total for our Charity.
Gertie and John Farmery receiving their lifetime achievement award and below at 2012 June Baker concert
John and Gertie have held their 6th June Baker Concert on 12th November 2012. The local Mayor presented Gertie with an engraved clock as a keepsake of this tremendous milestone.
Skydives
Abbie McNeill’s sister has OI and Abbie said “I just want to give a little something back to the Brittle Bone Society and get the awareness out as much as possible”. Abbie bravely did a skydive on a sunny day at Strathallan and has already raised more than her target of £1000. Kat Watkins, Mid-Wales
Watch our website for updates on appointments of new area co-ordinators. As this is going to press we can announce that Welsh rep - Kat Watkins will be attending Rare Disease Day in the Welsh Parliament on 20th February, Patricia Osborne will attend Scottish Parliament on 26th February and John Phillips will go to the House of Commons on 27th February. Maureen Groom, Birmingham
Tracey Fine – James Bond Premiere - Skyfall
On 30th October - Ambar Odeon Swiss Cottage and The Jewish Princesses held a sell-out event which raised £1051 for The Brittle Bone Society. They welcomed guests for the premier of Skyfall with a 007 cocktail, canapés and cupcakes and of course a nosh bag on every seat kindly donated by Barrowboy Crisps and The Food Doctor. Other contributors to this fabulous fun evening were Number One Blenheim Terrace, Innocent Drinks, Stella and Dot Jewellery, Fiona Trup, Fabric Magazine, The Odeon, Ambar at the Odeon. The photo shows Georgie Tarn, Katie Vincent and Tracey Fine
Philippa - aged 5 and already fundraising
Amy Shemilt’s 5 year old niece, Philippa, declared one day that she wanted to raise some money for ‘Aunty Amy’s charity’, The Brittle Bone Society. Her Mummy noticed that there was going to be a 1.5km race in Manchester in May and asked Philippa if she wanted to do that to raise some money! Philippa excitedly agreed and quickly started to ask her family and friends for sponsorship and ‘to train’ by running up and down the garden with her dog, Spot, alongside! Philippa has raised £155.
Bali Dhillon
Lynda Murdoch, sister of Jill Murdoch, another brave fundraiser did a skydive near Dundee on the same sunny day – and has raised over £200 with donations still coming in.
Bali and her friends climbed to the top of Ben Nevis despite dreadful weather and raised £508. We also received another £508 in matched funding from her employers Barclays which makes the brilliant total of £1016. Bali said “it was amazing weather was absolutely awful we went through rain, sleet, wind you name it we went through it, but it was still an amazing, experience and I still cannot believe I did it”.
Adam and Aidan
David Beattie
Aidan Scott-Nelson (10) and Adam Lewington (11) ran a 3km sponsored run on 1st September. The 3km Great Scottish Run took place in Glasgow and the boys were delighted to finish in less than 17 minutes and to raise £730.
Thank you everyone!
On 11th and 12th August along with 15 colleagues David cycled 281 km from the Co-operative offices in Manchester to The Co-operative Legal Services offices in Bristol. They were raising money for 4 charities of which we were one, and we received £1800 as a result of their efforts and a further £100 from the Co-operative Group as a “booster” for fundraising activities – this makes a total of £1900.
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BBS Fundraising hall of FAME
Neil Jeffreys Neil Ran the Ipswich half Marathon on 23rd September and was delighted to complete the race without any walking in 2 hours 16 minutes. He said “I was very proud to have raised over £1500 in total. Thanks to everyone for all your support, it kept me going (especially in the last half mile)”.
Phil Howell Adam and Aidan with their medals.
Abbie McNeil’s Skydive Phillipa and her mum with her medal
Phil completed the North Devon Cycle Challenge on 25th May and raised £784. This was the first long cycle he had ever done and both he and his daughter Gemma who travelled in the support vehicle have OI.
Blisworth Canal Festival
Dan and Marie
Phil Howell and his daughter Gemma
Dan Andrews and Marie Vistartas took part in the festival and raised £340 as well as helping to raise awareness. Dan said “It was a lovely weekend and the rain mostly held off apart from one short shower. We raised a lot of awareness. There were approximately 20,000 people there over both days and we managed to get a number of sneaky tannoy announcements to advertise the BBS”.
Bali at the top of the mountain with her t-shirt
Ideas for BBS fundraising Bone Idle Day – January – March 2013
We will soon be launching this fundraising challenge for people of all ages who like to chill out whilst fundraising. This is a new concept – a relaxing way to raise funds for the BBS! Get sponsored for doing nothing!
Wishbone Day 6th May 2013 – an early reminder to start thinking about ways to go yellow for the BBS on this world awareness raising day. We have an information pack available. Lets make this the most yellow spectacular Wishbone Day yet!
An African challenge for 2013 This summer 4 Brittle Bone Society volunteers, 2 of whom have OI, went out to Kenya and between them they raised over £3200 for the BBS. Amanda, Penny, Chris and Helen all worked for 10 days at The Walk, a school which provides two meals a day for the children and many of their siblings as well as supporting and working with the local community. Penny said “We had a very humbling and good time in Kenya. The people and the children were all lovely and though it wasn’t easy for me to get around in my wheelchair I did what I could and got involved with the project at The Walk”.
African Adventures
are looking for more volunteers who would like to travel to Kenya or Ghana to work with some of the poorest communities in Africa. You can help with a building programme, coach sports, or work in a classroom. In order to participate, each individual is asked to raise a minimum sponsorship of £2,095 over £830 of which is donated to BBS. The trips are for 10 nights and you can choose your project role and travel independently or with a group.
Award winning Paul Deadman’s Moroccan Climb Paul cycled from Vietnam to Cambodia in January 2012 and has decided to take on another huge challenge in June 2013. He will climb Mount Toubkal in Morocco To donate visit: www.justgiving.com/ pauldeadman-trek. Good luck Paul.
Stamps Neil Jeffreys—after the race
Lynda Murdoch—before the skydive (brave sister of Jill Murdoch our former Support Worker)
Tracey, Katie and Georgie at Skyfall premier Amanda at The Walk
A big thank you to Valley Infant School Solihull who are collecting stamps, and getting their friends and relatives to do the same. Ask your local schools to consider collecting all their stamps. The Brittle Bone Society raises over £600 each year from the sale of stamps but this could be much higher if members persuaded their local schools or employers to collect stamps.
We need YOU to ask your employer to help the BBS
David Beattie and his fellow cyclists
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Gertie and John Farmery—at the June Baker Concert.
Penny, Chris and Helen at the Walk School in Kenya
The Brittle Bone Society would love to be able to work with more organisations across the UK to raise vital funds and help raise awareness. Some companies do ask their employees to choose a charity of the year, make sure you nominate us if you get the opportunity. Please also ask all your family, neighbours and friends if they would do the same. Please contact Christine chris@brittlebone.org or phone 01382 204446 if you would like a fundraising pack full of lots of ideas on how you can fundraise on any of the above events. And 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.
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MARATHONS & RUNS Runners of all abilities needed please spread the news to all your family, friends, colleagues, neighbours, local running clubs….
Greater Manchester Marathon This race takes place on 28th April 2013 and we have 5 places for keen runners who are willing to raise £200 for the first official BBS Greater Manchester run. Please spread the word to all runners you know. Contact Christine if you are interested.
Parliamentary watch
The BBS recently joined Genetic Alliance UK and we are already members of Rare Disease UK. It is important we are attached to larger organisations who can add weight and support in policy matters.
Note from your Chairman . . . I was pleased to be re-elected at the AGM to serve as Chairman of our wonderful charity.
London Marathon - 21st April 2013 We have three official BBS runners Grant Cooper - http://www.justgiving.com/Grant-Cooper , Hayden Vincent and Oliver Zissman who are all training hard as well as fundraising. Duncan Sykes who was an official BBS runner in 2012 has been lucky to get a ballot place this year and will again be raising funds for the BBS.
British London 10k Race - 14th July 2013 We have 18 places for this very popular 10k race following the route of the 2012 Olympic marathon. Join the 25,000 runners who will race one of the world’s greatest routes passing some of the most iconic landmarks on their way through London. Contact Christine for more information. We ask each runner to raise £200.
Dublin Marathon October 28th 2013 We have 5 places for the “friendly marathon” we ask each runner to raise £500. Everyone who runs in this race has told us what a friendly event it is and how encouraging the crowds are – they even hand out sweets to the runners. Book your place now!
Elaine pictured with Trustee Harry Venet and Dr Christine Burren Left to Right Rebecca Bramhill, Christine Hope, Joe Fitzpatrick MSP, Patricia Osborne, Coreen Kelday and Annette McIntyre
There are hopes to set up a pressure group specifically about Rare Disease and we have met with our local constituency MSP Mr Joe Fitzpatrick—a Minister in the Scottish Government to inform him about our work and to seek support to get this group established. The BBS will be attending Rare Disease day events across the UK in 2013.
Catherine Potterton Olympic Torch bearer Former Trustee Catherine Potterton was selected to carry the Olympic Torch 2012 on the relay route, and was immensely proud to be chosen. Since then Catherine has been busy including running a can collection in Bournemouth raising £200. Catherine also attended the OIFE Conference in Lisbon and delivered a workshop and talk on Dealing with Pain. You can find Catherine’s in-depth report on this on our website. www.brittlebone.org
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Hardest hit seminar Scotland workshops WELFARE REFORM IN SCOTLAND What next? BBS member Marcus Donald attended a workshop on welfare rights held in Glasgow at Turning Point Offices.
attends OIFE Lisbon, Portugal
Could this be YOU ? The BBS urgently need runners for the Manchester run
MEMBERS CONSULT for BBS
Yvonne Grant, Simon Mckeown and Samantha Renke were all re-elected as Trustees. We have all been elected to serve until the AGM in 2015. Our Trustee, John Phillips, was confirmed at the AGM as Secretary of the Society. It is with great sadness, however, that I have to announce that Toni Potterton, our Vice Chairman, has decided to step down. All Trustees and myself would like to extend a public vote of thanks to Toni for all her invaluable help, support, and hard work on behalf of our charity over the years. I know that, from the day she became our CEO, Patricia benefitted greatly from Toni’s guidance and that they had a terrific working relationship. Toni will be greatly missed by all of us and by all of the staff at the Brittle Bone Society. So, best of luck Toni for the future and I am sure she will continue to be a firm and constant friend of the Brittle Bone Society. We also welcome the two new Trustees who were elected at the AGM – Mrs Jacky Boyd from Donegal and Helen Chappell from Leeds. I have worked closely with our CEO, Patricia Osborne, over the past three years during a challenging yet formative period. I hope that by remaining in the post of chairman, I can continue to offer continuity and support in our operational planning. Under the direction of Patricia and the Board of Trustees, we have entered into an exciting and ambitious phase. The work that we are undertaking with Pilotlight and the strategic leadership being provided by Patricia and the Board is intended to secure the long term success of the charity. We have financial expertise on the Board in the form of Robert Gordon and Harry Venet and through John Phillips, we have access to legal expertise and business experience. This brings me to a subject that I raised at the AGM and John touched upon in the Notice convening that meeting. We continue to be of the view that our Board of Trustees is too big, larger than most charities of our size and is almost twice the size of the number recommended by the Charities Commission. We need space on the Board for further appointments of individuals with specialist expertise. We now have 13 Trustees and so, are prevented by our Constitution from appointing further Trustees. Turning to developments since the AGM, we have just secured significant funding for our VOICE Northern Ireland event. This is consistent with our general progress on funding in the last year during which we have had a number of successes with significant third party funders. Our grass roots fundraising teams have also contributed immensely to a successful 2012 and we should all be grateful to them. In 2013 we aim to put on interesting events, develop new outreach support groups, take into account your views on policy and continue to increase our charity’s profile .
He writes the first session focused on the background of the Welfare cuts and they also looked at what could be done to address the problems. Marcus said “Of the two sessions, I found the second to be the most relevant e.g.what organisations and individuals can actually do to attempt to mitigate the effects of these cuts”. If you want to read Marcus’s full report go to our website: www.brittlebone.org
Marcus Donald pictured with his wife Karen
NHS services FIT FOR FUTURE BBS attends to hear the debate . . . BBS member Douglas Blaney attended a seminar on the future of NHS clinical services at Greater Glasgow Health Board. This programme was designed to feedback the emerging issues for change. The final session will be in the New Year to bring back updates on proposals for delivering a case for change. If you want to read Douglas’s full report go to our website www. brittlebone.org. The BBS is pleased that members are able to attend these types of events so that direct users of services can help us take part in consultations and have their say. You can ring the office and we will arrange to send you copies of these reports. (Tel: 01382 204446)
Wishing you all a Merry Christmas and Happy New Year. Catherine Potterton—London Olympics 2012 What a picture!
Elaine
BBS member and former Trustee Douglas Blaney with Elaine Healey
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Medical Advisory Board
The recent MAB meeting was held at Birmingham Childrens Hospital where we discussed the BBS strategic plan, our medical fact sheets, and a number of suggestions were made to provide translation services for all our literature. We discussed the BBS Fact Sheets and it was agreed that once the technical and medical detail is acceptable—we gain feedback from members. Looking to ensure style and practical effect and usefulness. It was agreed there would be a timescale to review literature so they remain up to date. The film we ran at Conference (a personal address by Professor Bishop) was discussed and the BBS would like to arrange more of these for our website and to attract support and funders. The Board agreed to co-operate with this. Future event planning was discussed and availability dates of the healthcare professionals to support our events was agreed. The Xmas lunch in Belfast was mentioned and Professor Faisal Ahmed from Yorkhill Childrens’ hospital agreed to attend. Other medical professionals suggested dates for our for UK Voice event in early 2013 and many were keen to attend if at all possible. We learned in early December 2012 that our funding for this to be held in Northern Ireland was successful with the National Lottery and we are grateful for this successful win. A number of projects were discussed including the BBS gaining approval to support the Raman Spectroscopy Research by the Royal National Orthopaedic Hospital (RNOH) to look at using lasers to diagnose bone diseases. This was approved and the BBS agreed to publish on BBS website. The prospect of the BBS considering a youth group like VOICE aimed at 11-16 years olds was raised by the Board. Other topics included the medics’ input to our strategic plan, and our hopes to aspire to sign up to the Information Standard (A Government initiative to ensure a watermark for information coming from the NHS) this is to be fully considered by the BBS. Board members agreed this to be a useful step to take and approved this. The members were also asked about BBS talks on collaborative work with other rare bone disease groups’ and this was welcomed going forward. All detail on this or similar projects would need to be fully discussed at the next BBS Trustee meeting. Other discussions included developing stronger website links. On a final note we discussed a number of other rare bone conditions including Hypophosphotasia. Our final discussions centred on improving links and communication between all highly skilled centres.
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POINT (Paediatric Osteogenesis imperfecta national team) At POINT tributes were given to the work undertaken by Jill Murdoch and it was explained that Rebecca Bramhall was taking up the position as support worker. Numerous offers for intensive training from all the POINT partners were received and the main focus of the meeting from the BBS’s perspective was about completion of the much anticipated fact sheets. Rebecca would be attending a number of training dates in early 2013 and the Trustee board expressed thanks for such positive co-operation in the work of the Brittle Bone Society.
YOUTH VOLUNTEER ACHIEVEMENT AWARDS We were delighted to acknowledge the efforts of three young volunteers, Rebecca Bramhall, Emma Burns and Claudette Day with Saltire Awards. These awards are for the recognition of hours given to voluntary work by youths of between 12 and 25 in Scotland. We signed up to this scheme in April and since then the three girls have achieved an amazing 200 hours between them.
BBS Fundraising Awards for the year 2011/2012 BBS Family Affair Award
The Wokingham Group, of BBS fund-raisers have been raising funds since 1981 — a staggering figure of over £27,000. (pictured Tasha Shackell and her mum)
BBS Financial Excellence Award Cameron Allen who is just 11 years of age very cleverly decided to use Wishbone Day in 2012 to raise money for the Brittle Bone Society. He raised over £6000 altogether - our youngest ever winner of any award!
BBS Group Award The Clapcott Family are long term members of the Brittle Bone Society and have been involved in a host of fantastic different fundraising events. Their daughter Penny is a star in her own right, appearing in a television documentary in the past year and featuring prominently in a spectacular show at the grand opening of the Paralympics.
BBS Extreme Challenge Award Paul Deadman, who hails from Beverley in North Yorkshire, decided on a 400km bike ride from Vietnam to Cambodia raising £3700. Paul has registered to climb Mount Toubkal in June 2013 to continue to raise money for the BBS.
BBS Long-serving/Lifetime Achievement Award Mr Des Kealey is 91 years young and has been fundraising for the BBS since his grandson who had severe OI died in 1999 – he has since then raised over £13,000.
Rebecca volunteered both at Voice and Conference and assisted with the planning of both events. Rebecca has also helped with fundraising and general office duties during her time with us. Emma has volunteered and helped at events such as Conference, Dublin medical symposium and Northern Ireland members events. Claudette who joined us in July has helped in the office with mail shots, gaining raffle prizes, can collections and also assisted with Conference.
We would like to extend our sincere thanks to all three girls for their ongoing support.
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Farewell & thank you Sheena from all your friends . . . This BBS Outstanding Award has been given to someone very special.
BBS Talent show Blackpool BIG SUCCESS for 2012 Sir Laurence Olivier Award winner Kerry Ingram hosted a star studded evening of fun and entertainment from the BBS kids—who had loads of talent and wowed audiences at the Imperial Hotel in Blackpool.
This amazing woman, Mrs Sheena Moreland, after almost 40 years and only recently having stepped down from serving as Honorary Secretary on the Trustee Board was winner of this newly created award. Sheena worked for 28 years at the Dundee Head-quarters of the BBS, involved in a number of roles from secretary to membership officer. Known affectionately to often two or three generations of the same family. Her knowledge of the families involved is legend. Her kindness, patience and attention to every detail over many years made her contribution special on every level. This outstanding lady was key in planning, booking and managing a number of BBS annual conferences and events over a number of years. She is somebody who understood the OI story - and seemed to always know just how to listen. As our Chairman Elaine Healey and all the members of the Trustee board agreed at a recent board meeting this lady is irreplaceable and is greatly missed for her input and her knowledge. Sheena was held in high esteem and in much affection and we wish her all the very best.
Thanks Sheena from all your friends at the BBS.
HISTORY BONES Update For the past couple of years the University of Dundee Archive Services has been working through over 50 large boxes of the Brittle Bone Society’s archive material. The ongoing project, which will see the archive sorted and catalogued, is an important one for the Society. The archive forms the BBS’s memory, it dates back to the early years of the Society and provides evidence of its activities and achievements. A glance at some of the material listed below will demonstrate why it is important that this information is preserved.
There are several gaps in the collection which will be highlighted in future editions of the newsletter. It is hoped that members may be able to supply some of the missing material and information.
The archive contains official papers such as minutes of meetings, including of the Annual General Meetings, dating back to 1981 and regional meetings dating back to 1984 along with other branch and central office papers, some of these go back as far as 1970. There is information about various groups associated with the Society and Society initiatives; including the Families in Conflict initiative and the Youth Forum. The Society Conferences are well represented with papers dating back to 1975. The importance of fundraising in the Society’s history is clear with several boxes of papers and correspondence relating to everything from lunches, to charity shops, and the BBC’s Children in Need and Radio 4 Appeals. Added to this are newsletters, factsheets, promotional material, newscuttings, photographs and films. The impact of the Society is reflected not only in the evidence of its day to day work but also in the correspondence with international members and in the research which was encouraged by the BBS.
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Blackpool Conference 2012
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The BBS say thanks for YOUR part in Conference
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Our thanks to Invited dignatories—Deputy Mayor Councillor John Boughton and Deputy Mayoress Jaki Boughton, to all the healthcare professionals, sponsors, supporters, funders and members who gave their support, to the Imperial Hotel staff and to everyone who contributed to the success of the Annual AGM and Conference 2012 this year in Blackpool and who included:
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The St James Place Foundation and the Souter Charitable Trust for assisting with funding our Crèche support at Conference. Our thanks to all the Healthcare and Medical professionals who help ensure the keynote talks and workshops are interesting and valuable, for the hard work of Crèche staff in attendance, to Conference Care for locating the venue and the staff and management of the Imperial Hotel in Blackpool for taking care of us all over the weekend. Our genuine thanks to the following: Dr Chris Burren, Dr Benjamin Jacobs, Action on Hearing, Dr Jennie Walsh, Dr Neil Gittoes, Claire Hill, Kingcraft, Jill Birch, Marc King, Dr Catherine DeVile, Andy Coupland (Welfare), Rod Duncan, Lauren Oakfield MIND, Paul Miller, Chenjiagou (Tai chi) Chris Clark, Chloe Jones, Kerry Ingram, Paul Noble, Wilma Lawrie, Toni Potterton, Harry Venet, Monique Jarrett, Robert Gordon, Tasha Shackell, Prof Nick Bishop, Film Maker Ben Wiles, Wicker Mobility, Permobil, TinyTrax, Rebecca, Emma & Claudette our volunteers, All BBS members who facilitated the sharing sessions. Trustees—Andy Mills, Mark Ross, Samantha Renke, Yvonne Grant, Simon Mckeown and Catherine Potterton. Abi Brown and David Queen.
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Support Group Interest Survey We are very happy to announce the first of our Support Groups have now been formed throughout the UK and Ireland. The next step is to find out how many people are interested in joining and what they are looking for in a group. We would be grateful if you would complete and return this form to the Brittle Bone Society at 30 Guthrie Street, Dundee DD2 5BS. The form may also be found online at www.brittlebone.org.
Name Address
Some of the things you said about Conference . . . Useful Information: This was fantastic first time in 26 years I’ve spoken to people that know what they are talking about. I’m now on the right track to getting the help I need at long last. Up until I was 19 everything was fine. From 19 - 26 I’ve been left to sort myself out.
Film from Professor Nick Bishop: Excellent idea. Could that film be made available on Youtube and on a DVD to be requested by members doing awareness sessions on OI and the BBS?
Postcode Telephone: Home
Mobile
Circle as appropriate
Can we pass your details to your area coordinator?
Yes
No
Are you interested in participating in the group?
Yes
No
I would like to be kept informed about future group events.
Yes
No
Your connection with OI:
So thank you Accommodation: We were given very spacious rooms for all of us and had a decent bed and room to accommodate - luggage, travel cots and the mass of baby stuff we had to bring. Food: Was excellent.. Maybe not enough for dinner .. But quality was fab
Please circle the group you would like to be put in touch with: Mid Wales
Birmingham
Preston and the North West
Scotland
Northern Ireland
Republic of Ireland
If you are interested in any other area not mentioned above please state:
BBS Talent Show: I think it was important to give the children their time in the spotlight and it was great to see them all displaying their talents and having a great time.
Support Groups: Great update on the support groups pity we were up against Dr Devile as I’m sure people were divided on which to attend in the end ........I myself find the support groups a big step forward for the members to gain a little control.
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Jill’s farewell
DWP E-ZINE Newsletter AND Update
We were very sad to say goodbye to our Support Worker Jill Murdoch, who had been with us for just over two years and built up strong relationships with Members, Medical Professionals and Staff alike. Jill will be missed, but has promised to keep in touch.
http://www.dwp.gov.uk/adviser/
During her time with us Jill provided an excellent service handling all types of enquiries. Jill was responsible for managing our Social Media presence, and helped organise and run many successful events including our Annual Conference, and assisted with our first Voice event in Telford, and subsequent ones in Reading and Edinburgh. Jill also launched our first outdoor Wishbone Event in Perth and despite us all being almost blown away she did her usual sparkling best. I am sure all our members would like to join us in wishing Jill all the best in her new venture with Autism Scotland.
Hospital stays—The benefits that disabled people receive may be
Welcome Rebecca
The benefit is usually affected after a person has been in hospital for more than: • 28 days, for people aged 16 and over • 84 days, for children under 16 years old.
In April 2013, a cap will be introduced on the total amount of benefits that working-age claimants can receive. DWP has worked with a number of organisations to develop a direct mail letter to tell people about the cap. This was sent to claimants between 20 September and 5 October 2012.
Appeals Process
Rebecca had been acting as Assistant Support Worker since October, and after extensive interviews, won through to meet the needs of the role. Rebecca is already settling in well and we wish her every success in her new role.
Following the Welfare Reform Act 2012, DWP is revising its appeals process for the benefits it administers, and child maintenance cases. The aim is to make sure more appeals against DWP decisions are resolved without being referred to Her Majesty’s Courts and Tribunals Service (HMCTS). The revised approach will focus on:
Thank you Julie & farewell . . . Julie Melloch has been a dedicated volunteer at the Brittle Bone Society shop for just over four years and has sadly now moved on to pastures new. Julie has provided excellent support over the years to Theresa our shop manager.
• Preventing disputes • Reducing the escalation of disputes • Resolving disputes • Learning from disputes
CREDITS Editor
Patricia Osborne | patricia.osborne@brittlebone.org
We would like to take this opportunity to thank Julie for her contribution to the society and wish her every best wish for the future.
Visits: members N Ireland Coreen really enjoyed her visit to Northern Ireland for our annual Xmas lunch event, along with our new support worker Rebecca and our Chairman Elaine Healey - report to follow soon.
Fundraising
Christine Hope | chris@brittlebone.org
Support
Rebecca Bramhall | rebecca@brittlebone.org
Sub Editor
Harry Venet, Trustee
Editorial Assistance
Coreen Kelday Office Co-ordinator
Newsletters and email addresses!
We will be reducing the number of printed newsletters next year, and so we are appealing to our membership to provide and supply the office with current email addresses so that we can update records. This shall also help us prepare for the installation of our much needed new database and records system.
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affected when they are admitted to hospital. This applies to people receiving the Disability Living Allowance (DLA) care component or Attendance Allowance (AA).
Benefit Cap
We are delighted to announce our new Support Worker is Rebecca Bramhall, who has volunteered with us for nearly two years. Many of you will already have been in contact with Rebecca or have met her at previous events.
They also looked at other venues for our planned VOICE youth event in the spring of 2013 which is also to be held in Northern Ireland.
Most DWP benefits, other than those for disability, carers and pensioners will be increased by one per cent for three years from 2013/14, subject to Parliamentary approval. The full list of benefit rates for 2013/14 was published on Thursday 6 December when Minister for Pensions, Steve Webb, made a Statement before Parliament.
Coreen Kelday | coreen@brittlebone.org Annette McIntyre | annette@brittlebone.org
General Enquires
Tel: 01382 204446 | bbs@brittlebone.org
Print & Design
Winter & Simpson Print | sales@wintersimpson.co.uk Registered Charity Nos. England & Wales 272100, Scotland SC010951