Dbi review issue Number 45 • January – June 2010

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Network News

Acquired Deafblindness Network

Co-ordinator: vacant

Website: www.adbn.org

Charge Network

Gail Deuce

Sense – Family, education and Advisory Service

The Anne Wall Centre

12 Hyde Close

Barnet, EN5 5JT


Tel: +44 (0) 208 447 1133

Email: gail.deuce@sense.org.uk

Communication Network

Ton Visser


Theerestraat 42

Sint Michielsgestel NL - 5271 GD


Tel: +31 - 73 - 55 88 111

Fax: +31 - 73 - 55 88 994

Email: A.Visser@viataal.nl

Congenital Deafblindness in Adults Network

Dominique Spriet

QUENEHEM BP 53 Rue du Mont Saint Eloi



Tel: +33 - 3 - 21 61 16 16

Email: sprietd@aftam.asso.fr


Ricard Lopez


C/Almeria, 31 ATIC

Barcelona ESP 08014


Tel: +34-678-712-619

Fax: +34-678-782-600

Email: rlopez@sordoceguera.com

Website: www.edbn.org

Employment Network

Seija Troyano

Nakskovinkatu 8 and 9

78200 Varkaus


Email: seija.troyano@dnainternet.net

Latin America Network

Sandra Polti


Email: Sandrapolti@yahoo.com.ar;

Rubella Network

Nancy O’Donnell

Helen Keller National Center for

Deaf-Blind Youths and Adults

141 Middle Neck Road

Sands Point, NY 11050


Tel: + 516-944-8900 x326

Fax: +516-944-7302

Email: nancy.odonnell@hknc.org

Siblings Network

Sabine Kersten

Koningsbeemdstraat 3

Lommel, B 3920


Tel: +32 11 53 35 93

Fax: +32 11 53 35 93

Email: siblingsnetwork@gmx.net

Tactile Communication Working Group

Bernadette Van den Tillaart

15175 Prairie Road

South Solon OHIO 43153


Tel: +1-740-426-6728

Fax: +1-740-426-6728

Email: bernadettevandentillaart@tiscalimail.nl

Usher Study Group

Marylin Kilsby


South East Regional Office

New Plan House

41 East Street, Epsom

Surrey KT17 1BL


Tel: +44–845 127 0076

Fax: +44–845 127 0077

Email: usher@sense.org.uk

European Deafblind Network (EDbN)

Ricard Lopez reports

The European DeafBlind Network (EDbN) is beginning the publication of a periodical electronic bulletin called “Deafblind Europe”. Our aim is to strengthen links and promote experience and knowledge exchanges among all the European people, as well as getting the society closer to understanding deafblindness by publicizing the everyday work that all of us do.

That’s why we are asking for articles, news items, letters, notices of books, information of forthcoming events or whatever could be of interest. Photographs, drawings, charts or any other graphic material will also be welcome.

The involvement of all of us is the best way of creating a publication we all feel pleased about through valuable information and up-to-date news. We look forward to contributions from people who are deafblind, their families, professionals and volunteers.
Please send any contributions to:

Ricard López, EDbN



Acquired Deafblindness Network

The Co-ordinating group of ADbN met in Aalborg Denmark on 20-21 March to finalise the programme for this years 8th Conference of ADbN “Building bridges – connecting people”.

Reflecting the continued growth in popularity of this event, the programme for the 2010 conference will include 7 plenary sessions instead of the usual 5. Also space for the 24 workshops was oversubscribed and so 4 additional workshops will be offered, reflecting the quality and variety of the subjects covered.

Registration for the conference is now open. At the last event in Bergen Norway we attracted over 200 delegates. We look forward to seeing old friends and new in Aalborg from 29th September 2010 – 3rd October 2010.

Check out the DbI website or go directly to www.dbcent.dk/adbn2010.

Ges Roulstone

Former Chair ADBN


The Siblings Network

Sabine Kersten reports:

Raising awareness is still our main task. It is important to make sure that professionals, as well as parents, realise that growing up having a brother or sister who needs extra care, is different.

We will be present at the family conference Listen to Me5 in Olomouc, Czech Republic, which will be held July 27 – August 01, 2010. During this event there will be a separate programme of fun activities for brothers and sisters.This event always is a special meeting, where families meet and share experiences, feelings, worries and have fun.

For the period September 29th– 3rd October 2010, there will be a conference organised by the DbI Acquired Deafblindness Network (ADBN) in Aalborg, Denmark. We are planning to present a workshop about siblings to raise awareness of the different family situation in which brothers and sisters of children with extra needs grow up.

Furthermore we are working on better information about deafblindness and about being a sibling. Having access to age appropriate information is very important for children and teenagers. It will answer some questions and decrease worries they may have.

I hope to see some of you during Listen to Me or ADBN.

For information on the network or what we can do for your organisation, please contact:

Sabine Kersten at siblingsnetwork@gmx.net

Usher Study Group

Marylin Kilsby reports:

The Usher Study Group has two main focuses – people with Usher and their friends and families and also professionals who work with, or who are interested in working with, people who have any Type of Usher syndrome. We are an international network which meets every two or three years, usually before or after a major conference.

This year, the Usher Study Group will be taking place on 27 and 28 September 2010 at the Hotel Hvide Hus, Aalborg, Denmark, prior to the ADBN conference. We have a rather ambitious programme which includes two sessions of workshops or special interest groups, when delegates will have to opportunity of networking and sharing their knowledge and experience. This, after all, is a Study Group, to which every delegate can contribute.

The USG would not be complete without Professors Bill Kimberling and Claes Möller, who will bring us up to date with the latest research into both the genetics of and possible future treatments for Usher syndrome. Several Usher people and Usher family members will be leading workshops, including an Ushers Only workshop and a Friends and Families workshop. Communication issues will be represented, as will a talk on young people with Usher. This group is growing ever larger as the Usher diagnosis takes place at a much earlier age than it did a few years ago.

Please contact me on usher@sense.org.uk for a full programme and registration form. Closing date for new registrations is 31 July 2010.

We look forward to meeting you in Aalborg!
Marylin Kilsby

Usher Projects Consultant

Sense UK

New Usher Study Group Organiser Required

I recently retired from Sense but am back at work on a short term contract until 31 October 2010, so that I can complete my work with the Usher Study Group among other projects. We will need a new organiser for the Usher Study Group, therefore, from 1 November 2010. This person will also represent the USG on the Board of Deafblind International.

If you are interested in finding out more about the role of USG Organiser, please contact me on usher@sense.org.uk.

Marylin Kilsby

Usher Projects Consultant, Sense UK

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