Summary from the Nordic working group in the Nordic CHARGE network
10th anniversary meeting at Dronninglund Slot, Denmark
Present: Airi, Sigrun, Sally, Ulrica, Kristina, Sonja, Annette, Lone
10th and 11th of May 2011
Update information from the national networks.
Restructure (reorganization) of the organization in Norway, a final decision will be made about this in
June. If there will be only one centre, it will be placed in Drammen.
The member from Tromsø in the national working group will be changed, due to retirement.
Working with the pain project; Sally has written a report about this process, based on their experience
with the questionnaire mostly to the leaders, but maybe it will be a booklet later on.
There has been worked quite a bit with communication in some parts of Norway.
Two people will present the topic:”the child’s voice” in Orlando, and they have written an article about
this. Sally and Sigrun will send a link when the article is published.
The amount of children with CHARGE in Norway is rising. We believe it’s because of further knowledge
about the diagnosis and because more children survive. And more are diagnosed because of the blood
test and awareness amongst the doctors.
Kungälv; the family conference was a great success, with participants from both Norway and Finland.
Kristina represented us in the Nordic leader forum. There are at this point no changes in the way we
The national working group meet in January. Ulla and Gunnel send their greetings. They have a private
website mostly about news and book reviews for both professionals and families. It’s possible to ask
questions, and they will seek answers.
Family and professional conference in Ågranska: Denmark represented with one family and Lisbeth
There are 25 children with CHARGE Syndrome at the resourcecenter, which is more than earlier. Mogård
7 adults with CHARGE.
New leaders at Mogård and the national competence centre for the deafblind.
This autumn there will be a meeting for families and professionals at Mogård. The goal is to socialize and
spread the knowledge about Mogård and CHARGE, there will be different topics. For both children and
Brynje would have liked to participate here, but it’s not possible. Now that Brynje has changed job, Ulrica
does not know who will be the new participant. A contact person is sufficient, it’s not necessary to join
the meetings every time. Henriette Hermann Olesen from NVC will try to find out something.
Greetings from Paivi.
Changes in the organizations in Finland parted in two areas. And have a new leader and a new place.
There are many uncertain things now, because it’s still new.
CHARGE work in Finland; Airi often has contact with Paivi. Deafblind organization and Hard of Hearing are
in corporation arranging family meeting in the autumn (happens every year). Deafblind organization is
the arranger this time. The main thing is to socialize and meet other families. The social aspect and
functional aspect is interesting and may be one of the topics. The meeting is for both children and adults.
Last time there were 12 families present. Information is spread by people who know people; by
There are still new children with CHARGE diagnosed. The amount is increasing.
The knowledge center for deafblind in Aalborg (Videnscentret for Døvblindfødte) has been reorganized, so
the magazine:”Døvblindenyt” is closing down.
The national working group is meeting twice a year; it is a group with about 18 participants, 3 parents
We are working on a small information leaflet about CHARGE to use in contact with professionals,
hospitals, doctors and families. We want to spread the knowledge about CHARGE.
Theme day 5th of October in Vejle; you are all very welcome. David Brown is on the program. On the 6th
there will be private consultations with David Brown.
Storytelling on the website about CHARGE in the knowledge centre: We work on the possibility to lay out
small stories from the daily life of people with CHARGE.
The group of children with CHARGE is increasing. Children in different ages. The consults are very
focused on CHARGE in children.
Annette and Lone will be attending the conference in Orlando.
At “Center for the Deafblind and people with Hearing loss” there is in august a conference for the
employees at the centre to share the knowledge we all possess, instead of travelling out in the world.
Generally it is very important for families to meet other affected families to share the problems and
issues that occur in families with CHARGE. It is important to meet families with children in the same age.
Maybe the vision is overlooked in some areas. It is necessary to be very aware of the function of vision.
Often the people with CHARGE cheat because of their compensation skills, so they hide their problems
with vision, and their behaviour is often misinterpreted. Tactile communication often helps.
Latest news about CHARGE Syndrome
Conference in Orlando, in July 2011.
Casey Stratton; worked with pain in CHARGE, she has made a new assessment tool for discovering pain
in CHARGE, based on further research.
Kim Blake; worked with studies about sleep problems, will present results in the near future.
In USA they are working more with the studies on CHARGE and the different senses (smell, taste etc.).
Svein Kolseth; “En sjelden kar” is being translated to English. There are some changes to the book and
The book; “CHARGE Syndrome”. Thoughtful to read the significant of the vestibular sense and the
influence it has on the cognitive development, and how walking affects the cognitive function, and the
importance of early communication. We wish someone would translate the book
Work with the topic: “Communication – persons with CHARGE Syndrome; challenges in making choices”
Case presentation by Annette:
A 62 year old woman with CHARGE; diagnosed with CHARGE 4 years ago. One member of staff is trying
to help her make a choice about activities. Unfortunately she works and lives in a non-sign environment.
Case presentation by Sonja:
Film clips from 3 different girls, choosing in a non-structured way.
Case presentation by Kristina:
A video clip with a 7 year old girl with CI. Have had a possibility to make a choice from 2 activities.
She wants the key for a special room, but it’s booked, and not possible to use. Afterwards she chooses to
stand and look at another activity, but not to join in.
A video clip with a girl, playing with a partner, where she in time makes him play the music for her.
She manages to tell what she wants but also to accept that she needs to wait until he is ready.
Visit from Henriette Hermann Olesen
Employee at the “Nordens Välfärdscenter” located at Dronninglund Slot. She is the coordinator for
development of the education of people working with people with deafblindness.
Short information to Henriette about the cases we have discussed during today’s meeting. Discussion
about why we chose to look at the topic “making choices” as a focus area for the Nordic Working Group.
We have a discussion about how to spread knowledge about CHARGE.
We are very welcome to use the Nordic Centre for Welfare and Social Issues as much as possible in the
process of spreading knowledge in the Nordic countries, both with lectures, writing of articles,
publications, seminars, conferences and other things it is possible to arrange meetings for both families
and professionals. At the website they will have a page about the CHARGE network. We can contact
Lasse Winther Wehner. We will send our summaries to Lasse and our mailing list to be published on
We are looking for a person to represent the working group from Iceland. Henriette will try to work on it.
NVC is arranging a Nordic Conference about deafblindness in Oslo 2012, 23th to 26th of April. We are
welcome to give a workshop here about CHARGE.
Do we have any international contact? We have no structured contact, but via Jude Nicolas we get
information about new ongoing things. We send our summary to the DBI international group, but don’t
hear much from them.
Meeting in 2012
In Bergen, Norway; 14th of May 2012 at 13.00 – 15th – 16th of May at 12.00. The time is important
because of the structure of the meeting; share together what time the flights are arriving before booking.
President; Sigrun and vice-president; Sally.
Topic for 2012
“Tactile sense and communication – focus on developing tactile support with persons with
CHARGE Syndrome. “
Choose a video case with focus on tactile support (from both multiple challenges, and high cognitive
Jude 2 hours lecture; talk about tactile cognition combined with tactile sense, give a lecture to give a
Request: Can Jude show videos and analyze them to see what happens when a person rejects the tactile
Child – Airi and Sally
Adult – Lone (otherwise Ulrica)
We prepare us for the next meeting by reading:
- In the book; “CHARGE SYNDROME” read chapter 13,18,25,26,27
- Booklet; “From active touch to tactile communication – what’s tactile cognition got to do with it?”
by Jude Nicolas.
- If Jude has some articles Sally will let us know.
Video cases from Sally about tactile communication
A little girl playing with her helper, about tactile closeness and how to share her attention in a tactile
way. Light touch from the helper to follow the attention and movements of the girl.
A man and his partner communicating using tactile sign language, with help from a interpreter.
The importance of talking about feelings and getting the help to, for example, finish the signs /making
them more obvious and talk about something important.
Nordic Conference about deafblindness in Oslo; 2012
On the 23th-26th April, we are welcome to have a workshop here about CHARGE. Do we have a
suggestion for the workshop, to Henriette?
- We are quite uncertain about what the arrangers of the conference wants… expects. Is pain a
topic everybody has heard? – Annette will have a talk with Henriette.
- Venche’s “the child’s voice” (also present in Orlando) (but not from the work in the CHARGE
- Ulrica’s pain workshop
- Or present the Nordic working group – ex the pain questions and evaluation of the process.
Theme day in Denmark, October 2011; you’re all very welcome, for both professionals and Danish
Annette and Lone are attending in July.
Brazil, September 2011
Ulrica will have a workshop about pain expression in CHARGE.
Sweden parents’ meeting in 2011, Sweden network meeting in 2011, Norway network meeting in
November 2011 Denmark network meeting in, November 2011
Members of the Nordic working group in the Nordic CHARGE network
Members in the working group; a maximum of 2-3 persons from each country, so that it won’t be too big
a group, 10 is too many. The group is open for both professional and parents, but it is the national
network that decides who represent the country, but it needs to be the same persons.
A small part of the meeting can be open to invite a relevant guest.
Sweden: Kristina, Sonja, Ulrica
Norway: Sally, Sigrun
Finland: Airi, Paivi
Denmark: Annette, Lone
Conclusions on the meeting
Evaluation of the form the meeting structure with cases. Good that the meeting starts at the agreed time,
and good that everybody arrive the night before, and have 2 days for the meeting. Main focus kept on
the prime subject and theories of CHARGE and the social afterwards in the evening. Good with the cases,
and the things that came up in the discussions about the cases. Good with a theme to work with before
and on the meeting. Eight is a good number for the meeting, with room for everybody. We have the
same way of thinking about our work with persons with CHARGE. Important that we have cases to
discuss and share our knowledge and ideas. Make sure that we put our materials on the NVC’s site, and
publish information about theme-days and so on.