NPUK NEWS The Official Newsletter of Niemann-Pick UK Autumn Edition 2016 In this Issue: NPUK Annual Family Conference / Our Fundraising Heroes/ Useful Help and Info / Research News / & Much Much More! Registered Charity Number: 1144406 NPUK Helpline: 0191 415 0693 Company Limited by Guarantee Families Officer: 01904 438589 Registered in England and Wales No: 07775835 Email: [email protected] Registered as a Charity in Scotland No: SCO45407 Website: www.npuk.org Welcome to the autumn edition of the all-new NPUK Newsletter: 4 This is the home of all things Niemann-Pick UK...so you’ll find everything from clinical trials to fundraising news - annual 24 conferences to Christmas parties, and much much more! Follow the contents guide to the right to read up on the subjects 34 which interest you most...we hope you enjoy this edition! All the best, 39 The NPUK Team p.s. did you notice anyone you know on the back cover? We were so proud of how our 46 community got involved that we decided to put a collage of everyone together on the the newsletter! Thanks again to everyone for taking part! 48 55 NPUK News Chairman’s Chat, 25 Years, Laura Bell, Elizabeth Davenport, Introductions & Goodbyes, NPUK Annual Family Conference Research Bill Owen Research Report, Clinical Trial Updates, Clinical Research Studies, Peter Carlton Memorial Award 2017 Our Events Chester Zoo, Christmas Party, Photoshoot, First Aid Workshop, Global Niemann-Pick Awareness Month, ITV ‘The Chase’ Fundraising Our Fundraising Heroes, Upcoming Runs & Rides INPDA Update from the INPDA, The Loire Valley Meeting In Loving Memory Adam Walters, Abubakar Mohammad, Emily Bushaway, Alice Byrne, May Dockney, Lorna Jane Mason Help & Info Advice for Parents, Big Lottery Fun, The Star Online, NPUK: Who We Are 4 Autumn Edition NPUK News 5 Chairman’s Chat: Many of you will know that Sue Woodhouse, our Information Officer, left NPUK in March 2016 to develop her own business. I would like to thank Sue for 10 years loyal service and wish her every success for the future. Our charity continues to evolve and I am pleased to welcome two new members of our team; Louise Metcalfe as Pro- ject Team Leader, a post fully funded by the Big Lottery, and John Lee Taggart, our Social Me- dia & Communications Officer, which is a post shared and partly funded by the INPDA. The increasing number of potential therapies for Niemann-Pick diseases is creating a lot of hope in our family circles, but choosing whether to take part in clinical trials and judging what is best for our loved ones brings many new challenges for our community. NPUK will always provide ac- curate and reliable information about all poten- tial therapies and the ‘Research Report’ (page Welcome to the new look 24) brings you up to date with the latest devel- NPUK newsletter! opments across the board. I hope you are en- couraged by this report and understand that as Welcome to the new look NPUK a patient support group we have to maintain our newsletter! The Trustees are independence, impartiality, and be transparent in extremely grateful to Emma Hes- all we do. For this reason we cannot endorse or ling of ‘Bonafide Guests Only’ who, promote one particular trial above any other. along with her team, has worked pro-bono to create this iconic new Our 23rd Annual Family Conference was once branding on our behalf. The colour again a great success, and this year we took the scheme retains the warmth of our opportunity to celebrate 25 years as a patient former sunshine logo and I hope support group. Celebrations included a balloon you will embrace our new strong- release, birthday cakes, and a chorus of ‘Hap- er identity and see it as a symbol of py Birthday’ by all those attending. Looking back hope that will assist us in reaching a over 25 years, we have kept afloat our hopes and wider audience. dreams for the future, forged lasting relation- ships, and brought people together to form col- As part of the rebranding process, laborative networks and achieve great outcomes. we have also developed a new website and improved our social On page 57 you can read about our Big Lot- media sites. Many people have tery grant funded project and, in addition, I am helped us in this task and I would delighted to announce that we have also been like to thank them all for their hard awarded a grant by Children in Need to part work and effort. fund the role of our Clinical Nurse Specialist. 4 Autumn Edition NPUK News 5 These grants bring much needed financial stability over the next three to five years but, in return, we are required to provide evi- dence of the impact they have on our families. We have therefore chosen the ‘Outcomes Star’ process to measure the difference our care and support ser- vice provides to families. You can read about this on page 57, and learn how it can assist us in measuring the impact of our care and sup- port service, as well as assist you by ensuring we are providing the services that meet your needs and expectations. In May this year, we commissioned an and the research, collaboration, and Organisational Strength Review; which services we provide could not be will feed into our next Strategic Review accomplished without the spectacu- Meeting in March 2017. It is at this meet- lar support of our families and friends. ing that we will set our objectives for the I would like to say a huge thank you to next three year period, which promises the many families and friends who take to be a challenging and exciting time for part in fundraising activities, make dona- NPUK, our families, and the whole rare tions, and manage collection boxes. Your disease community. However, just as we continuing support makes it possible to adapt and develop our services to meet sustain the services we provide and we the needs of our families so too must we remain extremely grateful for your con- adapt as a charity to meet and navigate tribution to our success. I would also like the challenges of the future. to acknowledge the extremely generous legacy of Miss Lorna Jane Mason that you We have developed an amazing group of can read about on page 54. Trustees and, in a planned change of role, I will be stepping down as Chair of NPUK I look forward to meeting as many at the AGM in November 2016. This will families as possible at the NPUK Christ- enable the appointment of a new Chair mas Party on December 3rd, I hope you to guide and lead us through the next can join us! You can find further details of stage of our development. It has been a this event on page…I would like to wish all huge privilege to serve as Chair of NPUK, our families and friends a happy and and I am extremely grateful for the help festive season of goodwill. I hope you en- and support that I have received from our joy reading this edition of the newsletter. Trustees and Staff throughout my tenure. I will continue in the role of Trustee and look We will look forward to hearing your forward to giving my full support to the thoughts and feedback on this new and next Chair, who will be appointed at the exciting format! AGM on 12th November 2016. As usual, there are many brilliant fundrais- Dave ing stories in this edition of the newsletter David Roberts NPUK Chair 6 Autumn Edition NPUK News 7 25 Years: New Brand, Same Vision! If you don’t already know this year marked 25 years of Niemann-Pick UK: a historic achievement which was celebrated during our Annual Family Conference along with our treasured families and amazing profes- sional delegates...both who play a pivotal role in NPUK achieving success in our next 25 years! You couldn’t escape the fresh and positive energy which resounded around the walls of Wyboston Lake’s Executive Centre, as with every turn that you took you could see something new...and we don’t mean John or Louise either! It was the new bright and breezy brand, something which is the product of three years of work from Team NP and Emma Hesling of Bonafide Guests Only – it’s truly sensational, and we sincerely hope you agree that it marks a significant upgrade Our Logo: This is often the first thing people see from the banner which we when they look up NPUK online, and it is also used in were working under previous- all of our publications, graphics, and merchandise – ly. It’s not that we want to throw so we felt we had to adjust it to allow for our brand to out everything from before, be up to date and modern. quite the opposite, we actually want to build on it so that we However you will notice that it isn’t entirely new, as can better deliver and promote it borrows it’s main inspiration from our previous the same vision which has sunny emblem. Instead of the yellow sun, we have a served us so well to this pres- brighter and more bold sun which reflects the hope ent time... we have for the future and the warm positivity which we see day in day out at NPUK. The most important changes you should be aware of are as We hope you find it as sleek and eye-catching as we follows: do! 6 Autumn Edition NPUK News 7 Our Website: Our website isn’t just a place where you end up after a Google search of Niemann-Pick Disease in the UK...it is much more than that – it is a bastion of infor- mation for our families and a way in which we can share our experiences, which is why we wanted to make sure that it is up to the minute and representative of our present standing.