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.