INVITATION
WEDNESDAY 9TH OF NOVEMBER 2016
NEURONAL
CEROID
LIPOFUSCIN
diseases
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 PM1st Workshop
4:30 – 5:30 PM 2nd Workshop
5:30 – 6:30 PM Drinks and appetizers; visit the information market
* The programme and workshops are subject to change.
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 e-mail.
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.
Bartiméus: Reception held
in the auditorium of the VSO
School, Van Renesselaan 30a
3703 AJ Zeist, The Netherlands
0031(0)30 698 22 11
Workshop 1&2
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.
*This workshop focuses principally on professionals, but parents are also welcome.
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.
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.
In this workshop, we will exchange experiences and ideas
about daily adaptations in the first years after the diagnosis.
Movement: Children with NCL3
(NOTE: only workshop in round 1)
This workshop will give practical tips about the most common
problems with motor skills in children with NCL3. Target audience: parents and professionals with a child in stages 2, 3 and
4 (*) 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.
* 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
Passive Care
(NOTE: only workshop in round 2)
This workshop will give practical tips about the (passive) care
for children and adults with NCL3.
Target audience: parents and professionals who have a child
or adult in stages 5, 6 and 7 (*) of the disease.
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 surroun-
ding 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. 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
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.
Counting Sheep
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. In this workshop possible causes of poor sleep
are explained, and behavioural and pharmaceutical treatment
strategies are discussed.
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.
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 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. 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?
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
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.