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BDFA Newsletter Batten Disease Newsletter ISSUE 31 AUTUMN/WINTER 2015 from the only dedicated UK charity raising awareness, providing support and funding research into Batten disease Batten Disease Family Association Registered Charity No. 1084908 01252 416323 [email protected] www.bdfa-uk.org.uk The Old Library, 4 Boundary Road, Farnborough, Hants. GU14 6SF 2 Dear Member From our Chief Executive From our Chair Dear BDFA members, friends and Dear all, colleagues, In our Spring newsletter, Andrea and I wrote When I sit down to write my piece for the about the new members of our staff team. I BDFA newsletter it always gives me the am very pleased to report that the staff have opportunity to take some time and look settled in well and are greatly enhancing our at what has been achieved over the past work. As a Board we consistently challenge few months. A wise friend always says that ourselves on every penny spent by the BDFA Andrea sometimes we are so focussed on getting so it has been very pleasing to see the benefits to where we want to be that we forget how that investment in our infrastructure and staff far we have come. The end of our journey is a much longed-for world Mike team has made. without Batten disease but we sometimes forget that we get there by all the single steps taken by our fundraisers, members, supporters As I write this report it is sad to see a major UK charity, Kids and families who live with this disease and its legacy every day. This Company, being forced to close. It is not for me to speculate on the newsletter gives us the opportunity to recognise all of those efforts reasons for this closure, but one thing we are led to believe is that and each step that brings us closer to our goal. the Charity was not holding enough cash in reserves with the result that they had to close immediately impacting greatly on their staff Over the past few months we have had the opportunity to work and the children who desperately needed their services. In the time closely with our friends and colleagues from across Europe and the I have been involved with the BDFA I have always been impressed rest of the globe. We are all so much stronger and louder if we fight by the way in which it has been run. Under the leadership of Julie this fight together so we were delighted to host the meeting of the Pickering, Pauline Docherty and now myself we have always been Batten Disease International Alliance and the next planning meeting prudent in our financial management and never begun a project of the European Education Project in London in June. More about without the funding in place. As a Board we have always discussed these meetings can be found on pages 6 and 19. Two members of the critical need for reserves. Recently we dropped this from 12 our team, Barbara Cole (BDFA Education Advisor) and Heather Band months to 9 months due to our significant financial growth but this (BDFA Scientific Officer) also attended the BDSRA conference this is something we will continue to review to ensure the sustainability summer where they were able to share our UK work and learn from of our work. our friends and colleagues in the US. Yet again I’m pleased to report that one of our large member events I am delighted to introduce a regular feature in our newsletter (and was a great success – the 10th Annual BDFA Walk and camping soon to be on our website) by Katie Hanson, our Batten disease weekend. I know it was greatly enjoyed by all and that for some of Clinical Nurse Specialist. We introduced Katie to you in our last our members it was a great opportunity to catch up with others who newsletter and she will use her slot as an opportunity to answer are sharing the same difficult journey or to remember those who questions that she is regularly asked by families during the course are sadly no longer with us. Our whole staff team did a fantastic of her work. She can of course also be contacted at Great Ormond job pulling together the wonderful weekend. Unfortunately what Street Children’s Hospital on 020 7405 9200 ext 0460 or by email started out 10 years ago as a fundraising event for the BDFA has ([email protected]). now become a rather large expense so next year we plan to do something different which we hope will achieve the same for our A busy summer saw us launch the first UK Batten Disease Awareness families but will also return the weekend to being a fundraising Day on 5th June and hold our 10th Annual Walk in the Cotswolds. event. I know the fundraising team are already busy planning so We were overwhelmed by the support shown to “Turn the World watch this space for more news. Orange” and our Awareness Day finished with the Spinnaker Tower in Portsmouth being lit up in orange as our Beacon for Batten. Friday Finally I am going to finish with more fundraising news as we 3rd June 2016 will be the date of next year’s Awareness Day and we have had some Herculean efforts in the past few months. Duncan will keep you posted as we get nearer that date. More details and Brownnutt and Rod Wark cycled 500 miles on a tandem to the Arctic photos can be found on pages 10 and 11. Circle. Not only was it a heroic physical challenge but it was also a very emotional one and we congratulate them on their enormous I hope you enjoy reading our latest newsletter and we would love efforts. to hear feedback on what you would like to see in the next edition. Please contact us by emailing [email protected]. As always, I do hope you have had an enjoyable summer and I look forward to we cannot do any of this without you, so together we will always keep seeing many of you at the BDFA Family Conference in October. our eye on a world without Batten disease knowing that each of our steps is bringing us closer. Best wishes, Best wishes, Mike Andrea Michael O’Connor, Chair Andrea West, Chief Executive [email protected] 01252 416110 / [email protected] Front cover image: 10th Anniversary Walk Balloon Release. Photo by Theo Roose www.bdfa-uk.org.uk Dear Member The Year Ahead 3 Can you help us achieve our vision? Contents a world without Batten disease Dear Member ..................................................................2 The BDFA is looking for individuals with the time, skills The Year Ahead ...............................................................3 and commitment to support its vital work by becoming Support & Advocacy .......................................................4 Trustees and helping achieve its vision of a world without Batten disease. From the Clinical Nurse Specialist ..................................5 The Board of Trustees is responsible for governing the Education .....................................................................6-7 BDFA and providing strategic leadership to plan its Spreading the Word ........................................................8 future direction and services. Trustees are elected by the Charity membership at the AGM. 10th Anniversary Annual Walk ........................................9 We need candidates with demonstrable understanding, Walk and Awareness Day Photos .............................10-11 expertise and/or experience of the governance of Family Story ..............................................................12-13 a charitable organisation. In particular, this year we would welcome candidates with any of the following Sharing Good Memories ..........................................14-15 experience/skills: Support Resources ........................................................16 • Knowledge of the challenges faced by families Research ........................................................................17 affected by Batten disease NCL 2016 ..................................................................18-19 • Experience of fundraising Research ...................................................................20-21 • Experience of PR, marketing, networking and campaigning Disease Registries .........................................................22 The role can be based anywhere in the UK and Clinical Trials ................................................................23 commitment is expected to be as follows: Hey Charlie BDFA Charity Single ..................................24 • Attendance at each bimonthly Board meeting (6 evenings per year, usually in London) • Attendance at the annual AGM and Family Conference (usually October) Diary Dates 2015/16 • Additional work averaging around 2-4 hours per month, on a flexible basis, to carry out related duties 19 November 2015 Kidz & Adultz up North, Manchester FURTHER INFORMATION 27 - 29 January 2016 British Paediatric Neurology • The term of office for each Trustee is 3 years (with the option to stand for an additional 3 years) Association Annual Conference, Sheffield • Trustees receive no remuneration for their services • The role is voluntary and the Charity may reimburse 10 March 2016 Kidz & Adultz in the Middle, out of pocket expenses incurred in the course of Coventry carrying out the role in accordance with the Charity Commission regulations. 3 June 2016 Batten Disease Awareness Day A full copy of our strategic aims can be viewed on our 5 - 9 October 2016 NCL 2016, Boston USA website. If you are interested in applying or would like to know more, please contact Andrea West, BDFA CEO, 01252 416110, [email protected] Ashley Murray Proud to support the BDFA Don’t forget we are on Facebook and now you can also find us on Twitter @BattenDiseaseUK www.bpdesigns.co.uk www.bdfa-uk.org.uk 4 Support & Advocacy Disability Living Allowance Recently, with the support of Greg Mulholland MP, we were able to meet with Justin Tomlinson who is the Minister for Disabled People and his team at the Department of Work and Pensions. During the meeting we raised the issue of Disability Living Allowance for families living with a diagnosis of Batten disease. Based on your feedback, we do not believe that the current application process works for affected families.
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