Invitation to an NCL Meeting: Bartiméus Zeist
On Wednesday, the 9th of November, Bartiméus is organising a NCL (Neuronal
Ceroid Lipofuscinosis) meeting. NCL is a group of rare, inherited metabolic diseases
which leads to the degeneration of the entire nervous system. Bartiméus specialises
in assisting people with NCL. During this time, various professionals from Bartiméus
will be present to share their expertise on all forms of NCL.
Are you a parent, family or otherwise personally involved with someone with NCL?
Or are you a professional: a paramedic, doctor, or someone involved in education,
home care or childcare? You are cordially invited to attend this afternoon.
Programme*
12:00 – 1:00 PM
Reception with a light lunch
1:00 PM
Start of Programme
1:00 PM – 2:30 PM
Lecture 1:
Sieglinde and Boudewijn Duinstra,
Parents of Jasper
Lecture 2:
Claudia van Alfen,
Chairwoman of NCL-Expertise Centre +
AVG
Feedback from the international biennial NCL Conference
that took place in October in Boston
Lecture 3:
Bert Veneberg,
Coordinator NCL-Expertise Centre
Investigation: “Living and working with people suffering
from NCL3”
2:30 – 3:30 PM
High Tea; visit the information market
3:30 – 4:30 PM
4:30 – 5:30 PM
1st Workshop
2nd Workshop
5:30 – 6:30 PM
Drinks and appetizers; visit the information market
* The programme and workshops are subject to change.
Invitation
Are you a parent, family or otherwise someone personally involved with someone
with NCL? Or are you a professional: a paramedic, doctor, or someone involved in
education, home care or childcare? You are cordially invited to attend this afternoon.
Date
Wednesday, November 9, 2016
12:00 PM – 6:30 PM
Location
Bartiméus
Reception held in the auditorium of the VSO School
Van Renesselaan 30a
3703 AJ Zeist
The Netherlands
0031(0)30 698 22 11
http://www.bartimeus.nl/documenten/routebeschrijvingen/Zeist%20route.doc
Registration and Information
You may register by email. Send an e-mail to [email protected] including
your address and any involvement with NCL that provoked your interest in attending.
We will take this into account. You may also indicate if you would like a translator.
If you are travelling from afar, we at Bartiméus offer possibilities for overnight stays.
Should you wish to take us up on this offer, please indicate this in your registration email.
Registration is possible until November 2, 2016.
In addition to sharing knowledge and experience, there is also space made for
conversations with others. With the understanding that contact with fellow sufferers of
NCL is important, we would also like to invite parents and others related who have
experienced the recent death of a child.
For more information about the NCL afternoon, please contact Bert Veneberg,
coordinator of the NCL Expertise Centre via [email protected] or ring
0031(0)6 558 300 70.
Workshop 1
Workshop 2
Touched by a Sense of Purpose!?*
Touch points for Connection
Touched by a Sense of Purpose!?*
Touch points for Connection
Through contact with parents with
children suffering from NCL, there are
situations where one finds oneself hit by
the parents' enormous grief, the
dilemmas they face or the beliefs they
share regarding life. It is precisely these
concerns that are often the key to giving
a sense of purpose.
In this workshop we will explore aspects
that relate to a sense of purpose, and
that provide tools to connect real
concerns to a greater sense of purpose.
Through contact with parents with
children suffering from NCL, there are
situations where one finds oneself hit by
the parents' enormous grief, the
dilemmas they face or the beliefs they
share regarding life. It is precisely these
concerns that are often the key to giving a
sense of purpose.
In this workshop we will explore aspects
that relate to a sense of purpose, and that
provide tools to connect real concerns to
a greater sense of purpose.
*This workshop focuses principally on
professionals, but parents are also
welcome.
*This workshop focuses principally on
professionals, but parents are also
welcome.
The First Years after Diagnosis
The First Years after Diagnosis
Besides the great sorrow in the first years
following the diagnosis of NCL3, comes
the daily adaptations required of parents.
Their child's vision may rapidly
deteriorate, causing adjustments to be
made at school as well as at home. The
home care teacher partners with parents
to improve the conditions of play, mobility
and self-reliance of the child. There is
also a large amount of attention given to
siblings, as the impact of the diagnosis
on the entire family is enormous.
Besides the great sorrow in the first years
following the diagnosis of NCL3, comes
the daily adaptations required of parents.
Their child's vision may rapidly
deteriorate, causing adjustments to be
made at school as well as at home. The
home care teacher partners with parents
to improve the conditions of play, mobility
and self-reliance of the child. There is
also a large amount of attention given to
siblings, as the impact of the diagnosis on
the entire family is enormous.
The use of tools such as a cane, tandem
or video magnifier is weighed with
parents and discussed how they might be
used.
The use of tools such as a cane, tandem
or video magnifier is weighed with
parents and discussed how they might be
used.
There are daily activities to be
considered: from swim lessons to
birthday parties, situations in which the
parents must decide what to tell the
outside world, and what might wait. What
is important for others to know in dealing
with their child.
There are daily activities to be
considered: from swim lessons to
birthday parties, situations in which the
parents must decide what to tell the
outside world, and what might wait. What
is important for others to know in dealing
with their child.
In this workshop, we will exchange
experiences and ideas about daily
adaptations in the first years after the
In this workshop, we will exchange
experiences and ideas about daily
adaptations in the first years after the
diagnosis.
diagnosis.
Movement: Children with NCL3
Passive Care
This workshop will give practical tips
about the most common problems with
motor skills in children with NCL3.
This workshop will give practical tips
about the (passive) care for children and
adults with NCL3.
Target audience: parents and
professionals with a child in stages 2, 3
and 4 (*) of the disease.
Target audience: parents and
professionals who have a child or adult in
stages 5, 6 and 7 (*) of the disease.
Movement is important! Even for children
with NCL3. As the disease progresses,
children and their caregivers encounter
more and more problems, first because
of deteriorating sight, and then because
of deteriorating motor skills. During this
workshop the most common problems
with motor skills will be discussed. Tools
and possible options will also be given on
how to preserve motor skills for as long
as possible. An additional focus will be
on how to guide walking.
With children or adults with NCL3, a
moment comes where the care needs to
be handed over to parents or
(professional) caregivers. This workshop
will discuss the timing chosen to go from
partial to full passive care. Also discussed
will be the tools and modifications could
be therefore needed. In addition, some
"tips and tricks" will be given for the care
surrounding NCL3, such as: how long is it
still safely possible to do a standing
transfer, and how to deal with the fear of
being moved or another sudden
antagonizing movement for a child or
adult with NCL3.
* as described in the book: “Op winst blijven spelen”
(translated The Profit of Continued Play)
Baakman, Niezen en Van Wageningen
Bartiméus Reeks ISBN 978-90-71534-55-3
´Im Spiel bleiben´
Baakman, Niezen und Van Wageningen;
Bartiméus Reihe ISBN 978-90-71534-67-6
During this course of this workshop there
will be an opportunity to experience the
various tools and to practice them.
* as described in the book: “Op winst blijven spelen”
(translated The Profit of Continued Play)
Baakman, Niezen en Van Wageningen
Bartiméus Reeks ISBN 978-90-71534-55-3
´Im Spiel bleiben´
Baakman, Niezen und Van Wageningen;
Bartiméus Reihe ISBN 978-90-71534-67-6
An Open Book about the Life Book
An Open Book about the Life Book
This workshop introduces you to the Life
Book. When you look into a photo album
and are able to relive a moment as 'the
moment,' it brings back memories and
enables you to share the experience with
others.
This workshop introduces you to the Life
Book. When you look into a photo album
and are able to relive a moment as 'the
moment,' it brings back memories and
enables you to share the experience with
others.
The Life Book offers the possibility to
create an 'album of experiences' through
images and/or digital sounds.
The school uses this means for its
students, especially for students with
NCL3.
In this workshop you will discover how
you can apply this tool, and what the
experience of working with it can mean.
The Life Book offers the possibility to
create an 'album of experiences' through
images and/or digital sounds.
The school uses this means for its
students, especially for students with
NCL3.
In this workshop you will discover how
you can apply this tool, and what the
experience of working with it can mean.
Counting Sheep
Counting Sheep
The sleeping problems of children with
NCL3.
The sleeping problems of children with
NCL3.
Children may face sleeping problems in
the various stages of NCL3. This not only
affects the child's welfare during the day,
but also has a big influence on the daily
functioning of the rest of the family.
Children may face sleeping problems in
the various stages of NCL3. This not only
affects the child's welfare during the day,
but also has a big influence on the daily
functioning of the rest of the family.
In this workshop possible causes of poor
sleep are explained, and behavioural and
pharmaceutical treatment strategies are
discussed.
In this workshop possible causes of poor
sleep are explained, and behavioural and
pharmaceutical treatment strategies are
discussed.
Quality of Life
Quality of Life
When someone is in a further stage of
NCL, there comes a point where the
medical care must also focus on his or
her mental well-being. How do they feel?
How is he or she dealing with the illness
and the subsequent deterioration? In this
workshop attention is given to make life
worth living, as long as possible.
When someone is in a further stage of
NCL, there comes a point where the
medical care must also focus on his or
her mental well-being. How do they feel?
How is he or she dealing with the illness
and the subsequent deterioration? In this
workshop attention is given to make life
worth living, as long as possible.
I am Online
I am Online
Society is digitalised. We communicate
and share more and more information
digitally. Everywhere you go, you find the
internet.
This workshop introduces you to the
website, www.ikbenonline.com.
A nationwide communication platform,
the website is accessible and userfriendly for people with visual and
learning disabilities, even for people who
can hardly read or write. Exchanging
photos, listening to music, e-mailing and
chatting with family or friends, all can be
done with our computer or other technical
Society is digitalised. We communicate
and share more and more information
digitally. Everywhere you go, you find the
internet.
This workshop introduces you to the
website, www.ikbenonline.com.
A nationwide communication platform, the
website is accessible and user-friendly for
people with visual and learning
disabilities, even for people who can
hardly read or write. Exchanging photos,
listening to music, e-mailing and chatting
with family or friends, all can be done with
our computer or other technical devices.
devices. In a digital society where people
with disabilities also have the right to
have participate as much as possible,
this tool is available to and useful for
them. And it is certainly available at
www.ikbenonline.com.
In a digital society where people with
disabilities also have the right to have
participate as much as possible, this tool
is available to and useful for them. And it
is certainly available at
www.ikbenonline.com.
In this workshop we will navigate this
platform together.
Limited Movement: what's that like?
In this workshop we will navigate this
platform together.
Limited Movement: what's that like?
Participants in this workshop experience
for themselves what it is like to have a
disability. Through the use of various
parts of a suit called 'Gert,' moving
becomes limited and aggravated.
Ordinary, everyday activities such as
standing and sitting, getting dressed and
walking cause much more difficulty than
most people are used to.
How does this feel, and how does it
impact functioning?
Participants in this workshop experience
for themselves what it is like to have a
disability. Through the use of various
parts of a suit called 'Gert,' moving
becomes limited and aggravated.
Ordinary, everyday activities such as
standing and sitting, getting dressed and
walking cause much more difficulty than
most people are used to.
How does this feel, and how does it
impact functioning?
A Visit to the Dark Perception Space
A Visit to the Dark Perception Space
In the dark perception space one can
experience what it's like to walk in a
space without seeing. Other senses must
then take over.
In the dark perception space one can
experience what it's like to walk in a
space without seeing. Other senses must
then take over.
In the space you are given a long cane.
Assignments are given of which you must
concentrate on orienting solely on smell
and sound.
In the space you are given a long cane.
Assignments are given of which you must
concentrate on orienting solely on smell
and sound.