EUSN Pre-Conference – “Living with Usher Syndrome”
Saturday 21 – Monday 23 July 2001
As you know, there has been a Conference Planning Team (CPT) for this conference. The Team consists of Carol Brill Doran, Liz Duncan, Miriam Bruggemann, Charlotte van de Molengraft, Christina Fasser and myself as Co-ordinator. We were planning to have a EUSN conference before the main DbI conference in Holland next July.
Unfortunately, we have had to cancel the EUSN conference. This is because the accommodation charges are much higher than we thought they would be and this has made the conference too expensive for Usher people and their families.
However, we have not abandoned the idea of a conference and we are planning to hold a conference in 2002, possibly in Switzerland, or maybe in Spain or Greece. We will tell you more news about this as soon as we have it.
The other news is that, although I am happy to remain on the CPT, I will be reducing my working hours from 1 April from 5 to 4 days per week. I seem to be becoming more deaf and more short-sighted and need to make some adjustments. I enjoy organising events but my reduced hours mean that I cannot give so much time to the CPT as previously.
We therefore invite you, whether you are currently on the CPT or not, to take on the role of co-ordinator of the CPT. You will inherit a draft programme which you could use for the conference if you wish, plus as much advice as you like!!! All offers should be emailed to Peter as Chairman but please can you cc them to me.
Looking forward to hearing from you
Marylin
Programme
current programme for download
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2.00 p.m. |
Registration starts
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7.30 p.m. |
Welcome dinner
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9.00 – 9.15 |
Welcome & setting up communication channels – Miriam?
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9.15 – 11.00 |
Plenary – Living with Change
Introduction – Chair – Christina?
9.20 – 9.40 Usher Type 1 – Gijs Bruggemann 9.45 – 10.05 Usher Type 2 – Jan Jakes? 10.10 – 10.30 Usher Type 3 – Seija Troyano? 10.35 – 10.55 Usher in the Family – Miriam? Peter? Barbara?
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11.00 – 11.30 |
COFFEE BREAK
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11.30 – 12.00 |
Plenary – Genetics & research update
Speaker from the EUSSG
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12.05 – 1.00 |
Plenary – Communication
Introduction – Chair
12.10 – 12.35 Communication Through Touch and Teaching sign to Usher hearing aid users – Sarah Reed and Jannice Floyd.
12.35 – 1.00 Hearing aids and cochlear implants – Carol? & Seija Troyano?
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1.00 – 2.30 |
LUNCH BREAK
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2.30 – 3.45 |
Workshops (lst Session)
1. Usher in the Family – Expanding on the Plenary Miriam Bruggemann and Barbara Suchert 2. Holistic & Interactive Communication Russ Palmer and Riitta Lahtinen 3. Usher Networks & Support Groups Lucy Drescher and Rainald von Gizycki
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3.45 – 4.15 |
TEA BREAK
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4.15 – 5.30 |
Workshops (2nd Session)
3. Usher Leisure – Riitta Lahtinen
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5.30 – 6.00 |
Summing up and Final Notices
Who? Marylin?
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7.30 |
Dinner & Social – with the European Usher Study Group
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9.15 – 9.30 |
Welcome & notices – Charlotte?
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9.30 – 10.00 |
Education for Ushers of all ages
Jean Jacques? Rob Vriends?
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10.05 – 11.35 |
Discussion Groups
Coffee break to be taken within your workshop groups.
1. Family and Friends (no Ushers allowed!) Led by Chris Sherlock and ? Fiona Pearl 2. Ushers who sign or use tactile communication led by two of Sarah? Jannice? Seija? 3. Usher Hearing Aid Users led by Carol Pollington and Liz Duncan
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11.40 – 12.50 |
Summing up (Chair plus panel from the EUSN)
· What is the EUSN? · What can you do for the EUSN?
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1.00 |
LUNCH Close of pre-conference
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The European Usher Syndrome Network (EUSN) is a new group that has recently become eligible for recognition by DbI as an emerging Network. It is for Usher people themselves, their families and friends, plus professionals who work directly with Usher people and their families, e.g. social services, teachers, employers etc. There are currently 18 people in the group; Peter Palmer is the Chair and Carol Brill Doran is the secretary. EUSN is a practical group and aims to share ideas, information and good practice within its membership.
All inquiries about the network or the conference should be faxed or emailed to Marylin Kilsby on fax number: + 44 (0) 20 7272 3862 or email: mkilsby@sense.org.uk
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