Newsletter 57 Autumn 2015 Angelman Syndrome Support, Education & Research Trust Liverpool 2015 Communication Matters Boy Bites Horse Angelman Syndrome Alliance Fabulous Fundraising Roundup A Plea for a Voice New ASSERT Merchandise Registered Charity 1021882 Rachel Martin Chair, Online Support, North West and Welsh Region [email protected] Rich Williams Vice Chair and Welsh Region [email protected] Lisa Court Treasurer, Merchandising and Central Region [email protected] OUR FREEPOST ADDRESS Sue Williams ASSERT, Freepost, PO Box 4962 Secretary and Welsh Region Nuneaton, CV11 9FD [email protected] OUR WEBSITE Katie Cunnea www.angelmanuk.org Research and South West Region [email protected] Diane Fox-Jones EMAIL ASSERT South East Region [email protected] [email protected] Linda Holmes HELPLINE Regional Meeting Coordinator and 0300 999 0102 North East Region ASSERT Families - New Diagnosis Advice [email protected] Contacts - Support Sian Cartwright Professional Advisor and North East Region ASSERT SHOP [email protected] Wear your charity with pride! T-shirts, polo shirts, bags, hats and lots more from Spreadshirt, our on-line retailer: Jonathan Allen Sibling Support and South West Region www.angelmanuk.org/spreadshirt [email protected] Catrina Fraser FRONT COVER Scottish Region Photograph courtesy of Robert Chadwick. [email protected] We’d like to use one of the great photos taken at our conferences on each of our future covers. If your AS family member was one of Mairi Leith-McGaw those photographed and you do not want their Scottish Region images used on ASSERT material please let us [email protected] know at the above address as soon as possible. Andrea Baines External Fundraising and Central Region CONTENTS OF THE [email protected] NEWSLETTER You will notice that the pieces in this newsletter are drawn from a wide variety of sources. While we are keen to promote discussion (non-Trustees) and to pass on any views and experiences, it is Rosemary Teggin also important to appreciate that the opinions N. Ireland & Eire representative and views expressed by contributors to this [email protected] newsletter are personal and not necessarily those of ASSERT. Louise Shaw Central representative [email protected] 2 2015 has been a fantastic year for ASSERT and one in which our ‘small’ charity grew up. We have always been blessed with an army of fantastic fundraisers for which we are all eternally thankful- and you have gone from strength to strength this year. But historically, as a charity, we operated in a two year cycle where much of our income was then spent on our flagship conference. All of the funding was down to the ASSERT community. Hidden away at the bottom of the Liverpool promotional material was a beautiful logo that really opens up the possibilities for the future. It simply said “funded by the National Lottery”. In a society with many charities all clamouring for attention, being recognised as a worthy recipient of a grant is priceless. And it is something that will open doors for us elsewhere as we get better at filling in the forms that make the DLA application look simple. Our commitment to the Angelman Syndrome Alliance is already evidence of this brighter future. As is our ongoing desire to champion the issue of communication at the highest level. It’s clear that, along with the much needed support aspect, both of these topics are at the top of the list for our members and we are now putting a lot of effort into these areas. We are at the start of the journey, but we have taken that important first step. And dreams are no longer limited by practical finance. But as important as the future is, we are still totally reliant up our intrepid fundraisers for the present. From all of us thank you. If the article in this edition inspires you to join them, then please get in touch. Without those sore body parts, it wouldn’t make any difference how many forms we fill out. International Angelman Day this year was also notable in that many of the events taking place around the UK were organised by you. 2016 is already starting to mobilise, so if there were no events in your area on or around February 15th, and you’d like to put that right, please do so. Meet Our New Trustee An update on Our Patron Hi, my name is Andrea and I am very excited to be a new Gareth ASSERT trustee! I am married to Ben and we have three Edwards... beautiful, lively boys, Will (9),Woody (short for Edward - AS del +ve, 7) and Jamie (4).We live in Abingdon, in Oxfordshire. It was so great My mother in law first contacted ASSERT for us when Woody coming to Liverpool was diagnosed with AS in April 2010. He was then 18 months old and the information and support we were given was a and meeting lifeline.The support has continued over the years, with regional everyone. I’m back meet-ups, conferences and contacts with Angelman families far in London filming for and wide. a while. We should hopefully be done As Ben ran the London marathon in 2013 for ASSERT, I know early next year. Then first hand how much time and effort people put into fundraising. its onto editing ready for release in December 2016. I can’t run to catch a bus, but after many years We have a busy 12 months ahead! I will hopefully see working in science research (both behind the lab bench and in you all again soon, maybe at the conference next year admin roles I am hoping to be able to help raise extra money for ASSERT by applying for grants to support existing projects depending on my schedule and I also hope to be able and to fund new ones too.The Liverpool ASA/ASSERT scientific to give you some exciting news in 2016! conference was my baptism of fire and I was so proud to have been part of the team for that. 3 I’m not sure what I expected to happen at Liverpool Scientific Gala weekend. As a veteran of helping deliver many conferences, some of the aspects of the weekend were very familiar. The last minute juggling, the multitasking, meeting friends old and new and of course, burning the candle at both ends. However, I wasn’t really prepared for what actually happened and the lasting memories created. The scientific debate, I’m ashamed to say, went well over my head. It’s probably true to say that I was as confused as the scientists and our guests were when our coach driver decided that he wanted to drive round Alder Hey hospital twice. Given the importance of the NHS in Liverpool in the Angelman story, I’m sure they didn’t mind too much. But that didn’t stop intense debate and scrutiny and the few bits I did understand left me wanting to understand more. Saturday began well, with many familiar faces arriving and the parent conference getting into full swing. Some of the speakers were those that had attended the scientists’ day. Others were regular favourites with updated data and information. Again, much to take on board for us all- and Katie will pick up elsewhere. On behalf of ASSERT, I’d like to apologise to our foreign delegates for the Liverpudlian coffee. I’m told that one of the highlights on the city tour we organised for them Saturday morning was for a Starbucks seen near a famous Beatles landmark. During the afternoon, I had the privilege of sitting in with the ASA meeting and listening to the passion, the determination to overcome barriers both cultural, financial and national was inspiring. I’m also very proud that ASSERT is laying a part in this multinational development- and this was celebrated at the end of the afternoon with two new member groups joining the Angelman Syndrome Alliance. Don’t tell anyone, but the paper they signed was blank on the day- with the formal agreement being drafted over the next few months. 4 Which leads us on to the Gala dinner. The room looked stunning. Our attendees even more so. A delicious meal quickly lead to the speeches of which mine was first. The bad jokes aside, it was an honour to be the support act for both Gareth Edwards and Liz Huglin, Harry Angelman’s niece. As I said at the beginning of my bit- it was great to see so many experts on AS in one place. And a few scientists. It’s a strength of ASSERT that we are often our own support. It cannot be underestimated how important it is to us and it is something that is greatly admired from afar. Gareth then gave a heart-warming and poignant account of his relationship with his niece, Ella and of a recent set visit to his current Star Wars project. It was a pleasure to listen to him speak and that Oscar speech can’t be far away. He really is proving to be a great ambassador for both ASSERT and our members- and we hope to capitalise on this much more over the next year or so. Liz Huglin. What can I say? Aside from welcome to our community. A community you knew nothing about and one that holds so much gratitude to your family. The room listened intently as she recounted her memories of her uncle, the origins of the family name and the profound effect the days experience was having on her.