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This Edition Is Sponsored by Sense Rubella Immunization Time In Number 54 • January 2015 This edition is sponsored by Sense Rubella immunization time in Tanzania A message from the President eafblind International was formerly known Das the International Association for the Dear Friends and colleagues, Education of Deafblind People. ur last Management DbI Review is published twice yearly, the two editions Committee (Man Com) are dated January and July. O and Board meeting were held The editor will be pleased to receive articles, news in Belfast during the ADBN items, letters, notices of books and information on forthcoming events, such as conferences and courses, conference in November. Some concerning deafblind children, young adults and of us also attended the Usher older people. Photographs are welcome. Syndrome pre-conference. All written material should be in the English language As usual ADBN’s conference and may be edited before publication. It should be was packed with interesting sent for publication to arrive by the date below. presentations and workshops. Opinions expressed in articles are those of the author A great week all round. There and should not be understood as representing the is more on the conference in coming through. Those of view of DbI. this edition so I will leave you you who have organised DbI DbI Review is also available on disk. If you are to read for yourself. conferences will remember interested in receiving your copy in this format, DbI was delighted to only too well how important please contact: welcome Lord Low, President it is to get this right. Matthew Wittorff, of ICEVI to our meeting. We Congratulations to Denmark DbI Secretariat were grateful for Lord Low’s PO Box 143, Burswood for organising the next DbI WA 6100, Australia contribution to our Board European conference in 2017. Email: [email protected] and his presentation at the They have already started Telephone (08) 9473 5422 AGM. The World Federation of their work which is fantastic. Facsimile (08) 9473 5499 Deafblind invited us to their The Man Com is equally TTY (08) 9473 5488 meeting but unfortunately our interested in the progress of dates clashed. Nevertheless nominations for 2015. Huge it’s great to be ever developing thanks must go to Cathy Proll links with our partners. and her team for guiding DbI We are currently looking at through the process. We are Editor our budgets for next year and really keen that our members Stan Munroe in particular sponsorships. take an active interest and Design We have a very small budget vote for their officers and Geoff Dunn but are all too aware that Board membership. I offer Distribution and DbI Membership the demands for people to DbI Secretariat many thanks to the Board Email: [email protected] attend events and conferences members who contributed to DbI Website are increasing. Fundraising a review of the strategic plan. Stan Munroe and Secretariat remains a struggle and there Carolyn Monaco and Matthew Editorial Office are no easy answers here I’m led this session. It will be the CDBA Office, 2652 Morien Hwy, afraid. job of the new/refreshed Board Port Morien, NS, Canada B1B 1C6 It was also good to in 2015 to check they are Tel: +1 902-737-1453 welcome James Thornberry Fax: +1 902-737-1114 happy with the draft strategy from Sense International Email: [email protected] or make their changes. and Tony Best, chair of the Website: www.deafblindinternational.org We take our responsibilities scientific committee for the for Networks very seriously and DbI world conference in Lucy Drescher gave an interim Romania in May 2015. The report. The annual reports will Cover: Rubella immunization time in Tanzania abstracts are coming in and be available in January 2015 Tony is delighted with how and we look forward to hearing the programme is shaping from all our colleagues and up. The registrations are also getting the up to date news. LAST COPY DATE FOR THE NEXT EDITION: 15 MAY 2015 2 • DbI Review • JANUARY 2015 JANUARY 2015 • DbI Review • 2 Contents A message from the President Page 2 It’s important that DbI our Review will bring you Editorial and Contents Page 3 recognise the contributions up to date with all the that so many of you make. activities. Finally Sense is Vice President’s messages Page 4 Without your commitment delighted to be following Articles we wouldn’t be able to in the footsteps of Royal DbI World Conference have such an energetic and Dutch Kentalis and Conference Advertisement Page 5 inspirational organisation. sponsoring this edition. DbI Conference Itinerary Page 6 So if you haven’t sent your Happy reading and all the ADBN Conference/Usher Syndrome nominations for awards to best from everyone at DbI. Pre-Conference Bernadette and her team, Welcoming Speech by Gill Morbey Page 7 please do so now. Kind Regards ADBN Conference overview Page 9 So indeed it’s a busy time Gill Morbey To Work in a Professional Way Page 10 with lots going on and as ever President Deafblind Bushwalkers in Western Australia Page 13 ADBN Conference photos Page 18 Editorial Usher Syndrome PreConference overview Page 20 Usher Syndrome PreConference photos Page 21 elcome to the 54th An emotional journey Page 22 Wedition of DbI review. The importance of an Usher This edition begins with the Syndrome community Page 24 theme of conferences. Just Self-regulation of emotion in around the corner is the 16th CHARGE Syndrome Page 26 DbI World Conference, hosted International Congress Page 31 by Sense International and Conclusion of the first European Union Sense International Romania project on deafblindness Page 33 during the last week of May Perkins School for the Blind 2015. Conference Chair Touch, explore create Page 34 Tony Best has an interesting from Mark Dunning, parent update that should entice of Bella with Usher Syndrome News from Perkins Latin America Page 36 potential participants to (who was in attendance with Michael Collins named to Hall of Fame Page 37 register soon to attend this – her Dad) and Chair of the Dr. Aubrey Webson named as the first world conference held USA based Usher Coalition, Ambassador to United Nations Page 38 in Eastern Europe! an emphatic declaration Sense International In early November, of how important family India to rollout vaccine against rubella Page 39 members are in fostering key Sense Northern Ireland Rubella vaccination spreads Page 40 genetic research into Usher hosted the Usher Syndrome Educating children within their Syndrome. Conference (the first since communities in East Africa Page 41 This edition also presents 2010) followed by the 10th Everyone is in the sphere of power (Peru) Page 43 ADBN Conference. Both were just a few of the ADBN Conference presentations, Grundtvig Project – Mapping opportunities smashing successes. This for deafblind people in Europe Page 72 edition features a sampling including: a brief overview from the editor; DbI President Frambu Resource Centre for rare disorders Page 74 of the many practical and Marie’s story – a new film about provocative plenary and Gill Morbey’s welcoming address; a philosophical a congenitally deafblind girl Page 76 workshop presentations Tactile street name signs Page 77 featured during the full five plenary from Henrik days of these events. Brink about ‘working as Country News Pages 46-65 Several articles featured professionals’ in the field of Brazil, Canada, Germany, Hungary, Ireland, Italy, Jordan, Romania, UK from the Usher preconference deafblindness; and a detailed included: Emma Boswell’s description by Angela Wills Network News Pages 66-71 overview, a shortened version of a trekking adventure in CHARGE, Communications, Social Haptic of Megan Mann’s brilliant Western Australia undertaken Communication, Youth, Outdoor, Siblings by a group of adventuresome presentation about the DbI News and Membership individuals with Usher personal Emotional Journeys Secretariat News Page 78 Syndrome. experienced by several Board Membership 2011-2015 Pages 80-82 individuals from the UK; and (continued on page 42) Sense advertisement Page 83 Corporate Membership Listings Page 84 JANUARY 2015 • DbI Review • 3 Vice Presidents’ Messages Vice Presidents’ Messages Bernadette M. Kappen reports: provide a limited number Service Award and the of sponsorships. If you are Lifetime Achievement Award. interested in sponsorship, you At the Board meeting can find the application form in Belfast, the strategic on the DbI website (http:// plan for the past four www.deafblindinternational. years was reviewed. It org/sponsorship.html). was so encouraging and I want to remind you motivating to see how to consider nominating a many of the activities have e are in the process of colleague for one of the been completed. As with Wpreparing for the World DbI Awards. People working any strategic plan – we are Conference in Romania in with individuals who are never finished. When we 2015. This will be an exciting deafblind are outstanding. meet again in Romania it time to renew friendships, They go about their work and will be a time to celebrate make new friends and never ask for praise but this the accomplishments of gather new ideas to make is the time we should honor DbI and to wish the new our programs better. The individuals and share their Board and ManCom the best program and venue for the achievements with others. in continuing the work of Conference is outstanding The nomination form is on making the world a better and I encourage you to try the website (http://www. place for individuals who are to be there. In an effort to deafblindinternational.org/ deafblind. support individuals to attend awards.html) for the Young the Conference, DbI will Professional Leadership Bernadette M. Kappen Award, the Distinguished Carolyn Monaco reports: evaluation and engaged in of the scientific programs further discussions on this of events like this available topic at our meeting in the to persons around the world fall.
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