Newsletter 200902 by zhouwenjuan


									Newsletter                                                  June 2009

                       Dear All,
                       We live in the middle of summer in the northern
Dear All
ICPS news              parts of the world. It means that the sun sets
EACD                   very late, there is no darkness just twilight. This
CP Research            weekend is the highlight of the summer in
EDF                    Finland. However the weather is not on its best.
Greetings from         The temperature goes only just over 10 Celsius
                       degrees and it rains almost every day. It is not
Forthcoming meetings   normal even in Finland at this time of the year.
                       But it makes it easier to sit inside, to have a
Greetings from the     computer in front of you and to work. Like most
President of USA       people in Finland I’ll be on my summer vocation
                       in July. The next newsletter will come out in
Registration form
                       September. I kindly ask you to send material for
                       that before September the 7th.

ICPS news

ICPS challenges and goals

In the last newsletter there was        Whenever we have a project,
told about the sub committee,           an updated database of these
which prepared the discussion           items      is     necessary.
about the future of ICPS for the
Executive Committee in Utrecht          2.   Involvement
in May 2009. As told before the         The subcommittee agreed that
following      topics       were        ICPS needs to involve more
discussed:                              people with CP as well as
                                        parents. Adults and parents
1.    Networking                        know what is going on, what
We all have a network of                developments there are and
professionals,        institutions,     what     developments     are
schools etc. that we know /             needed. Apart from that adults
work with, However, there is no         and     parents   have    the
general ICPS database of this           experience and the expertise
in either written or digital form.
regarding their lives and their       ICPS over the last 40 years.
situation.                            However, more work needs to
                                      be done, in order to keep the
3.     Vision/passion                 attention     to   CP    drawn
A first draft for a ICPS              internationally. CP should be
statement of values will be           lobbied for in order to get it /
drawn up by Johannes. Some            keep      it   on   the   map.
lines / key words stand out
already: ”Help people to help         There were a couple of you
themselves;           humanistic,     who accepted the challenge
holistic,    equal      rights    /   and answered Mr. Johannes
opportunities, life span care,        Verheijden Thank you for that.
“from     womb       to     tomb”;
supporting the wish to be             In the committee meeting the
helped;       family       centred;   discussion was very active. The
inclusion if possible; “if it can’t   ideas of the sub committee
go the way it should, it should       were agreed and the meeting
go the way it can!; psychosocial      decided who will be responsible
                                      for the first steps in the
4. CP on the map                      process.
We have agreed that CP has
been put on the map by the

Important ICPS Events
                                      The AGM of ICPS will be held
The main event of ICPS this           in     connection    with    the
year will be the conference “A        conference on Saturday the 7th
global status quo on Cerebral         of November at 17.30.
Palsy, with a view to the future”.    As always we will have election
It will be held in Utrecht, The       to     the     ICPS   Executive
Netherlands on the 5-7th of           Committee, too. There will be
November, 2009. In this               four vacancies, because the
newsletter you will find a lot of     first term of Luis Farres, Anita
information        about       the    Loring,     Eleni   Roditi  and
conference. To see the detailed       Johannes Verheijden will end
program please got to our web         this     year.      Under   the
site    Constitution all of them can
Glick “ICPS 40th Anniversary          stand for re-election. The
International Symposium” on           nomination papers for election
the left column.                      will be sent before the end of

“A global status quo on Cerebral Palsy, with a view to the future”.

Het Vechthuis, Utrecht, The Netherlands,

5 – 7 November 2009

To celebrate the anniversaries of:

The International Cerebral Palsy Society (1969)
The BOSK Workgroup Cerebral Palsy (1974)
The Dutch Academy of Childhood Disability (2004)

Dear Participant,

It is the honour of The International Cerebral Palsy Society (ICPS), the Dutch Academy of
Childhood Disability (Dutch-ACD) and the BOSK, Association of Physically Disabled
Persons and their Parents to welcome you to Utrecht and to present the final program of the
International Symposium:

“A global status quo on Cerebral Palsy, with a view to the future”.

To celebrate the 40th anniversary of the International Cerebral Palsy
the 35th anniversary of the BOSK work group Cerebral Palsy and the
5th anniversary of the Dutch Academy of Childhood Disability.

Prof.dr. Jules Becher, VU Medical Centre, The Netherlands
Dr. Owen Hensey, Central Remedial Clinic, Ireland
Mr. Aimo Strömberg, ICPS, Finland
Dr. Jan Willem Gorter, McMaster University, Canada
Dr. Eugène Rameckers, SRL, The Netherlands
Dr.Bianca Nijhuis, Saint Maartens’ Clinic, The Netherlands
Mr. Johannes Verheijden, BOSK, The Netherlands

The Symposium will take place at:

Het Vechthuis
Jagerskade 13
The Netherlands

Route description with public transport

From Central Station Utrecht, take bus 6 or 7 direction “Zuilen/Overvecht”. Alight at “Anton
Geessinkstraat”. Cross the metal bridge and turn left. After 150 metres you will find the entrance
of “het Vechthuis“ on your right.

Thursday 5 November 2009
Utrecht City Hall, Korte Minrebroederstraat 2, 3512 GG Utrecht
A welcome reception on behalf of the ICPS, the Dutch-ACD, the BOSK and the city of Utrecht
will be held at the Utrecht City Hall from 19.00 – 21.00hrs. The costs for this event are kindly
sponsored by the city of Utrecht and included in the registration fee.

The following hotels have been as kind as to offer their cooperation.
Delegates are requested to make their own reservations.

NH Hotel Utrecht
Jaarbeursplein 24
The Netherlands
Tel.: +31 (0)30 297 79 88
Fax.: +31 (0)30 297 79 99
Registration code: 93300842 or “BOSK”

Park Plaza Hotel Utrecht
Westplein 50
The Netherlands
Tel: +31 (0) 30 292 52 00
Fax: +31 (0) 30 292 51 99
e-mail :
Website :
Registration code: ID: 3158995 or “BOSK”

BOSK, Association of physically disabled persons and their parents
P.O. Box 3359
The Netherlands
Tel: +31 (0)30 – 245 90 90
Fax: +31 (0)30 – 231 38 72

Prinsess Beatrix Fund                   City council of Utrecht

Medtronic BV

For any further information or enquiries please contact the conference organiser.

Plenary sessions by order of appearance


Anita Loring, International Cerebral Palsy Society
Jules Becher, Free University Medical Centre Amsterdam
Eric Huyzer, BOSK Work Group Cerebral Palsy
Jan Willem Gorter, McMasters University Hamilton
Eve Blair, Australian Cerebral Palsy Register
Lluis Farrés Cardosa, ASPACE, Barcelona
Frida Lygnegård, Jönköping University Foundation


Ans Kilkens, Sint Maartens’ Clinic
Stephen Bennett, United Cerebral Palsy Washington
Jean Westmacott, People Potential
Archie Hinchcliffe, Cerebral Palsy Africa
Darcy Fehlings, Bloorview Childrens’ Rehabilitation Centre
Thor Sandmel, Norwegian Cerebral Palsy Society
Mijna Hadders-Algra, University Medical Centre Groningen


Johannes Verheijden, BOSK
Phillipa Butcher, Australian National University
Muwonge Godfrey, HOpe for CErebral PAlsy Uganda
Robin Mathea, Parent to Parent Wisconsin
Carlo Schuengel, Free University
Ashraf Tahboub
Marij Roebroeck, Erasmus Medical Centre

Oral presentations by name

Aarts Pauline:      Modified constraint induced movement therapy in the pirate group: A
                    Randomized Clinical Trial (Thursday, Togenzaal, 15.30hrs – 15.50hrs )

Araújo Liliane:     Development of self determination skills in a programme of adulthood
                    transition: a case study (Thursday, Kolfbaan, 16.10hrs – 16.30hrs)

Bes Yolanda:        Caring for Augmentative and Alternative           Communication      (AAC)
                    (Thursday, Togenzaal, 16.50hrs – 17.10hrs)

Biju Nirmal Jacob: Complications during post surgical rehabilitation following single event
                   multilevel surgery in Cerebral Palsy (Thursday, Togenzaal, 16.30hrs –

Brinkman Marie-Joline:  Trunk-balance-instability in children with perinatal hypoxic-ischemic
                   Encephalopathy. (Friday, Kolfbaan, 15.30hrs – 15.50hrs)

Burger Karine:      Physical fitness and skill training in children with Cerebral Palsy GMFCS I
                    and II, and other neurological diagnoses: a feasibility study (Friday,
                    Kolfbaan, 15.50hrs – 16.10hrs)

Cameron Deb:        A step into the future: occupation based / task oriented approaches in the
                    intervention of children with Cerebral Palsy (Thursday, Togenzaal, 15.57hrs
                    – 16.10hrs)

Dallmeijer Annet:   Strength training in children with Cerebral Palsy. Results of the Popeye
                 (Thursday, Togenzaal, 16.10hrs – 16.30hrs)
Eck Mirjam van &
Voorman Jeanine: Functioning of children with Cerebral Palsy during transition to adolescence
                 (Friday, Togenzaal, 16.30hrs – 16.50hrs)

Folmer Katinka:     Does walking with skies reduce the knee-flexion in midstance in children
                    with Cerebral Palsy and gait type 4 according to the Amsterdam gait
                    classification scale? (Thursday, Kolfbaan, 16.30hrs – 16.50hrs)

Heijmans Eric:      Emotions in the life of an adult with unilateral spastic cerebral palsy.
                    (Thursday, Kolfbaan, 15.50hrs – 16.10hrs)

Kemps Rachèl:       Measuring preschool children’s participation: construct validity and reliability
                    of the PART (Saturday, Togenzaal, 16.50hrs – 17.10hrs)

Lopes Daniela:      Assessment of Sexual Consent Capacity
                    (Friday, Togenzaal, 16.10hrs – 16.30hrs)

Louwers Annoek:     Efficacy of a dynamic brace on bimanual activities in children with
                    Hemiplegic Cerebral Palsy. (Thursday, Jagerszaal 15.50hrs – 16.10hrs)

Mulder Selma:       An educational- rehabilitation program for children with severe psychomotor
                    retardation. (Thursday, Togenzaal, 17.10hrs – 17.30hrs)

Nieuwenhuijsen Channa: Adults with spastic Cerebral Palsy are at risk for an inactive lifestyle
                 (Friday, Togenzaal, 15.30hrs – 15.50hrs)

Oswell Jean:        The impact of person centred planning on the quality of life of adults with
                    physical disabilities attending day services in the Central Remedial Clinic in
                    Ireland (Thursday, Kolfbaan, 15.30hrs – 15.50hrs)

Piskur Barbara:     The influence of the social environment on children’s participation
                    (Thursday, Jagerszaal 2, 15.50hrs – 16.10hrs)

Remijn Lianne:      Treatment of feeding problems in young children with impairments
                    (Thursday, Kolfbaan, 16.50hrs – 17.10hrs)

Rentinck Ingrid:    Parental reactions following the diagnosis of Cerebral Palsy in their young
                    Child (Saturday, Togenzaal, 16.30hrs – 16.50hrs)

Roebroeck Marij:    Adolescents and young adults with Cerebral Palsy: do environmental and
                    personal factors contribute to participation in society?
                    (Saturday, Togenzaal, 15.50hrs – 16.10hrs)

Roze Elise:         Functional motor outcome at school age of preterm infants with
                    periventricular hemorrhagic infarction (Friday, Kolfbaan, 16.10hrs –

Schasfoort Fabienne:     Actual everyday physical activity level, quality of life, and gross motor
                  function in children with spastic Cerebral Palsy: the added value of
                  botulinum-toxin injections in combined treatment with multilevel botulinum-
                  toxin injections and intensive functional physiotherapy. (Thursday,
                  Jagerszaal 2, 15.30hrs – 15.50hrs)

Slot Wilma van der:          Participation and health-related quality of life in adults with spastic
                      bilateral Cerebral Palsy (Friday, Togenzaal, 15.50hrs – 16.10hrs)

Smits Dirk-Wouter: Classifying learning styles in paediatric rehabilitation practice: first
                   experiences in children and adolescents with Cerebral Palsy
                   (Thursday, Jagerszaal 1, 15.30hrs – 15.50hrs)

Smits Dirk-Wouter: Relationship between gross motor capacity and daily life mobility in children
                   with Cerebral Palsy (Saturday, Togenzaal, 16.10hrs – 16.30hrs)

Vermeulen Jeroen: Preoperative MRI findings and functional outcome after Selective Dorsal
                  Rhizotomy in children with bilateral spasticity.
                  (Thursday, Kolfbaan, 17.10hrs – 17.30hrs)


Bult Maureen /
Piskur Barbara:       Measuring participation in leisure activities of children: The use of the
                      Children’s Assessment of Participation and Enjoyment (CAPE) &
                      Preferences for activities of children (PAC) (Friday, Jagerszaal 2, 15.30hrs
                      – 16.50hrs)

Hilberink Sander:     Lifespan Care (aimed at professionals) (Friday, Jagerszaal 1, 15.30hrs –

Hilberink Sander:     Lifespan Care session (aimed at youth/adults with CP)
                      Saturday, Jagerszaal 2, 15.30hrs – 17.10hrs)

Ketelaar Marjolijn: Knowledge Brokers: What are they and how can they help move research
                    evidence into clinical practice.
                    (Thursday, Jagerszaal 2, 16.10hrs – 17.30hrs)

Rameckers Eugène:      Two modes of intensive upper limb therapy for children with unilateral
                spastic Cerebral Palsy Task-specific training and CIMT
                (Thursday, Jagerszaal 1, 16.10hrs – 17.30hrs)

Willems Mia:          Towards a more family-centred approach
                      (Saturday, Jagerszaal 1, 15.30hrs – 17.10hrs)


Bulle Evelien:        Psychometric evaluation of the Pre-School Children’s Assessment of
                      Participation and Enjoyment (Pre-School CAPE) for children with and
                      without physical disabilities.

Dallmeijer Annet:     Physical fitness testing using cycle ergometry in children with cerebral

Elema Agnes:          Comparison of three instruments for measuring health-related quality of life
                      of children with severe cerebral palsy.

Hielkema Tjitske:   LEARN 2 MOVE, effects of age-specific interventions to optimise
                    performance of mobility-related activities of children and adolescents with
                    cerebral palsy (CP): the age group of 0 to 2 years.

Kombrink Marianne:       Implementation of the National Guideline "Diagnosis and treatment of
                  children with spastic cerebral palsy”. How to do it?

Kruijsen Anne:      LEARN 2 MOVE 2-3: Efficacy of child-focused intervention and context-
                    focused intervention on the performance of mobility-related, and self-care
                    activities in toddlers (2-3 years) with cerebral palsy.

Longo Egmar:        Participation in leisure activities in children and adolescents with cerebral
                    palsy in Castile and Leon – Spain.

Magalhães Erika:    The relation between autonomy and physical dependency on adults with
                    cerebral palsy: an ethnographic approach.

Siebes Renate:      Assessing needs of families with children who have motor disabilities.

Slaman Jorrit:      LEARN 2 MOVE 16-24: Effects of an age specific intervention to stimulate
                    mobility-related activities and improve physical fitness of adolescents with
                    spastic cerebral palsy, a study design.

Stel Yvonne:        Face Former reduces drooling of children with cerebral palsy. A pilot study.

Weerd Margreet van der: Cognitive capacity in 6-and 7-year-old children with Cerebral Palsy.

Wely Leontien van: LEARN 2 MOVE 7-12: Effectiveness of an activity stimulation program on
                   performance of mobility and lifestyle in school-aged children with cerebral

Special meetings

Dutch-ACD lunch with review of EACD Conference in Vilnius
Saturday, Togenzaal, 13.00hrs – 14.00hrs

ICPS Annual General Meeting
Saturday, Togenzaal, 17.30hrs – 18.30hrs



21st Annual Meeting of the           EACD is willing to increase
European         Academy        of   cooperation     with     parent
Childhood Disability                 organisations. That’s why it has
FROM MYTH TO EVIDENCE                established the Task Force
was held on the 3rd - 6th of         Group “Family”. Carmen Matey
June,      2009,    in    Vilnius,   from Spain is physiotherapist, a
Lithuania. It was the first time     board member of EACD and in
for EACD to hold a meeting in a      charge of that Task Force
country, which used to be a          Group. She is also EACD’s
part of Soviet Union. The 21st       person to organise with ICPS
Annual EACD Meeting was              the Parents and professionals
under the patronage of H.E. Mr.      meeting in Barcelona in the
Valdas Adamkus, President of         autumn next year.
the Republic of Lithuania. He
also had a speech in the             The next EACD conference will
opening ceremony. The speech         be in Brussels on 27-29 May
was a very strong political          2010. Prof Bernard Dan is the
statement for the society where      Meeting President in Brussels.
those who need care and              He is willing to have also
medical treatment must get it.       parents participating. There are
He pointed out that the name of      on the agenda such titles as
the meeting “From myth to            “Role of Parents”, “Inclusive
evidence” is well chosen,            education”, ”Communication”,
because as the other nations          “Policy Making in childhood
from former Soviet Union             disability”. Please write the
Lithuania had to overcome and        dates already now on your
is still struggling with a lot of    calendars.
myths installed by communist
ideology.                            There was held the AGM of
                                     EACD in Vilnus, too. EACD got
The meeting was very well            a new secretary. Professor
organised. The program was all       Mijna     Hadders-Algra       from
the time on schedule. The            Holland had been active taking
hospitality of the organising        care of all the practical things of
party was first class.
the organisation. She stepped        Haataja. She is the Research
down. The new secretary is           leader in Paediatric neurology
Paediatric neurologist Leena         in Turku University, Finland.

CP Research

A research about lifetime            with CP, who were born in 1930
costs of cerebral palsy has          to 2000 and were alive in 2000.
been made in Denmark.                The prevalence of CP in
                                     eastern        Denmark       was
Kruse M, Michelsen SI, Flachs        approximately 1.7 per 1000.
EM,     Brønnum-Hansen      H,       Information on productivity and
Madsen M, Uldall P.                  the use of health care was
National Institute of Public         retrieved from registers. The
Health, University of Southern       lifetime cost of CP was about
Denmark, Denmark.                    860 000 € for men and about
                                     800 000 € for women. The
This study quantified the            largest component was social
lifetime costs of cerebral palsy     care costs, particularly during
(CP) in a register-based setting.    childhood. A sensitivity analysis
It was the first study outside the   found that alterations in social
US to assess the lifetime costs      care costs had a small effect,
of CP. The lifetime costs            whereas lowering the discount
attributable to CP were divided      rate from 5 to 3 per cent
into three categories health         markedly       increased     total
care costs, productivity costs,      lifetime    costs.    Discounting
and      social     costs.    The    decreases the value of costs in
population       analyzed     was    the future compared with the
retrieved from the Danish            present. The high social care
Cerebral Palsy Register, which       costs and productivity costs
covers the eastern part of the       associated with CP point to a
country and has registered           potential gain from labour
about half of the Danish             market      interventions     that
population of individuals with       benefit individuals with CP.
CP since 1950. For this study        PMID: 19416329
we analyzed 2367 individuals

Karin     Sandström       from   disability”. Her study has been
Linköping University, Sweden     published with ISBN 978-91-
ha made a research with the      7393-731-3 and ISSN 1100-
name “Adults with Cerebral       6013. This is the abstract from
Palsy – living with a lifelong   the report.

Invalidiliitto          (Finnish     Age related musculoskeletal
Association of People with           changes        that      deteriorate
Physical Disabilities) and           functioning appear e.g. in a
Finnish       Cerebral     Palsy     person’s ability to perform
Association has started a            activities of daily living, walking
project to get information about     and mobility. Functional decline
the well being and rehabilitation    among adults with CP begins
of adults with Cerebral Palsy        commonly between years 20-
and to develop proper services       30. In addition to different
for adults. At first a review of     physical changes, adults with
the publications was made and        CP experience age-related
published.     This     is    the    emotional        changes.       Both
ABSTRACT of the review.              physical       and         emotional
                                     changes            affect         the
This review describes the            independence, life style, health
characteristics of the changes       and social situations of adults
in health and functioning of         with CP. This review showed
aging adults with cerebral palsy     that research focusing in aging
(CP), the period of life when        adults with CP is splintery, and
these changes usually appear         there is a lack especially of
and       intervention     studies   intervention studies and studies
examining adults with CP aged        describing                subjective
30 years or older. The               experiences of persons with
documentation is based on            CP. Additionally, the review
research- and review articles        demonstrated that according to
obtained from the PubMed,            modern          research          the
MEDLINE, Medic, SveMed+,             understanding        on     cerebral
CINAHL, OT-seeker, PEDro,            palsy is very negative as
PsycINFO, ERIC, Cochrane, A          research        interests       have
SAGE Full-Text Collection,           focused         on       limitations,
Political      science,     Social   deficiencies,             secondary
services        abstracts      and   problems and disorders.
Sociological       abstracts     –
databases, and Google –              The         review      provides
search       engine,     published   information that can be used in
between years 1990–2008.             developing national standards
Additionally,     articles    were   of activities and solutions for
searched by tracing the lists of     improving the well being and
references.                          functioning of aging adults with
                                     CP. Both international and
                                     national need for information on
CP-related aging processes is         studies that aim at helping
major, and this information is        adults with CP to achieve better
required by professionals in the      health and well-being by
fields of social work, healthcare     supporting theirs inclusion and
and rehabilitation, as well as by     participation in all major life
persons with CP and people            areas.
close to them. It is hoped that
this review will at least partly      Keywords: cerebral palsy, CP, adult,
satisfy this need of information.     adulthood, older adults, aging,
Challenges of future studies          functioning,    ICF,     intervention,
include       developing      and     rehabilitation,   rehabilitation    of
                                      disabled person
executing comprehensive and
multi-professional intervention

The World CP Register                 document provides a summary
Congress      was      held    on     of the Cerebral Palsy Register
February the 19th 2009, as            and Surveillance Survey forms
part    of   the     International    completed.
Cerebral Palsy Conference in          The current report is intended
Sydney. It was mentioned in           as a reference document for all
the previous newsletter. For the      interested persons, most
conference a survey was               immediately those attending the
developed and sent to all the         World     CP    Register    and
registers or surveillance groups      Surveillance Congress. The
known by the authors at this          report can be read on
time (N=39). This           


EDF had the AGA in the beginning     BOARD OF DIRECTORS
of May. The most important issue
was the elections. The AGA elected   The Board of Directors is
the President, the Board of          directly elected by the General
Directors The newly elected Board
                                     Assembly for a four-year
elected the Executive Committee.
                                     period (2005-2009). It is

composed of 30 members,                   > Erik Olsen (ENUSP)
including  10    Executive                > Karin Brünger (EDA)
Committee members.                        > Miguel Angel Garcia       Orca
The following Board delegates             > Satu Järviö (CP-ECA)
                                          > Pierre Mertens (IF)
represent 14 European NGOs
and 16 National Councils:               Board members from ordinary
EDF President
                                          > Athena Frangouli (CEFEC)
                                          > Josée Van Remoortel (MHE)

                                        New elected members of the
                                        Executive Committee:
                                          > Vice      President,   Erzsebet
                                            Szöllösi (FESZT)
                                          > Vice President, Donata Vivanti
                                            (Autism Europe)
Yannis Vardakastanis                      > Treasurer, Pekka Tuominen
National Confederation of Disabled        > Secretary, Rodolfo Cattani
People, Greece (ESAEA)                      (EBU)
                                          > Ana       Pelaez     (CERMI),
Board members from National                 Executive Committee member
                                            without portfolio
                                          > Stig Langvad (DH), Executive
   >   Gunta Anca (SUSTENTO)
                                            Committee member without
   >   Ingemar Färm (HSO)
   >   Giampiero Griffo (FID)
                                          > Alain Faure (CFHE), Executive
   >   Krasimir Kocev (UDPB)                Committee member without
   >   Branislav Mamojka (NRZOP)            portfolio
   >   Gisèle Marlière (BDF)              > John Patrick Clarke (EDSA),
   >   Thomas Mihkelson (EPIK)              Executive Committee member
   >   Richard Rieser (UK Coalition)        without portfolio
   >   Boris Sustarsic (NSIOS)            > Ingrid     Körner    (Inclusion
   >   Andrej Szalach (PDF)                 Europe), Executive Committee
   >   Anthony Williams (ÖAR)               member without portfolio

Board members           from     full
member ENGOs:
   > John Evans (ENIL)                  For CP-ECA the meeting was
   > Jean-Luc Simon (DPI)               very important. Valerie Lang
   > Niels-Anton Svendsen (BIF)         had been our representative

on EDF Board. She wanted to       pleased to the work Valerie
step down. We tried to find a     has done as the CP-ECA
new     representative.   The     representative in EDF. She
Executive Committee decided       has done an incredibly great
to nominate Miss Satu Järviö      job there. Now it is much
from Finland for the election.    easier for Satu to start her
We    succeded      and   she     work there than it was for
became       elected.     The     Valerie.
executive members are very

Valerie’s “testament”:            I was able to lobby for your
                                  new     representative,  Satu
REPORT TO ICPS ON FOUR            Jarvio, who was successfully
YEARS ON THE BOARD OF             been elected to the Board last
THE           EUROPEAN            Saturday, 9th May.
                                  In 2005 I also attended a
                                  Board meeting in Cardiff. In
                                  2006 the Board met in Vienna,
                                  Rome and Helsinki; it met in
                                  2007 in Berlin, Lisbon and
                                  Brussels; in 2008 in Brussels
                                  again, Slovenia and Paris, and
                                  this year in Prague and
                                  Athens. Of these, I have only
                                  missed the Board meetings in
                                  Helsinki and Prague.

                                  I also represented EDF at a
                                  meeting of a Council of
Having just stepped down          Europe Committee of Ageing
from the Board of the             and Disability. I was shocked
European Disability Forum         first to find that not only was I
(EDF), I have had the honour      the oldest person there – by a
to represent EC-CPA (an off-      long way – but I was also the
shoot of ICPS) since 2005. I      only disabled person there. I
was surprised to be elected in    was also shocked when it was
2005, but I realise now that      made abundantly clear to me
Anita and Aimo had been           that      these     professionals
lobbying hard for me. In return   thought that I was there only

to interfere, and that I could      aims to give a voice to these
not possibly have anything to       groups - and others.
contribute. One young woman
from Belgium made a point of        Although it does work hard on
contradicting everything I said.    rights, I would like to see it
I fear that I have not gone to      give some attention to using
any more of this Committee’s        its weight to improve the nitty
meetings. I have found this         gritty issues of daily (or almost
antagonism many times in the        daily) lives. For instance I
past, and have usually been         cannot        understand     why
able to overcome it. On this        airports treat wheelchairs as
occasion however, I felt that at    “fragile” when they go off to be
the age of 68, I just did not       loaded onto aircraft – but they
have the stamina to fight this      are not “fragile” when they are
same battle over again. I have      unloaded at the other end.
left it to someone younger. It is   Time       and     time     again
a pity because I do have            wheelchairs come bouncing
knowledge and experience of         along the baggage conveyor
the problems of growing older       belts, often in pieces. I think
with cerebral palsy.                the solution is to make the
                                    airports or baggage handling
Obviously there is still a long     firms liable for the full
way to go, but EDF has real         replacement cost. Again, as a
achievements in the field of        constant user of hotels, I
Disabled People’s rights. It        would like to see EDF putting
was very active in the United       pressure on hotels to be more
Nations Convention on the           accessible. I do not expect
Rights of Disabled People. It       every room to be wheelchair
had important inputs in the         accessible,      but    if more
recent EU Regulation of Air         showers were in cubicles (with
Passengers Rights, and is           a few grab rails) instead of
working on making taxis,            over baths, I would have
buses and coaches, and sea          thought that many older
going vessels more accessible       people would be grateful. It
to disabled passengers. It also     would certainly help those of
works on improving the rights       us who have mild or moderate
of    disabled    people      in    disabilities.
employment,     of    disabled
children in schools, and of         I think that over the past four
disabled women and girls. It        years I have made the
                                    members of EDF more aware

of Cerebral Palsy and its           Meetings alone takes up about
ramifications. Satu still has       nine days a year on average.
much to do, but I feel that I am    Generally the Board Meetings
leaving the work in capable         last a day and a half, but one
hands.                              has to add travelling time to
Perhaps it is worth saying that
like all voluntary work, EDF        I would be happy to elaborate
meetings and activities can         on this report, if anyone needs
take all the time one can give.     to know more.
I have not involved myself with
many       “extra”    activities.   Valerie Lang.
Attending the main Board            13.5.09.

Satu’s greetings:                   work. The European disability
                                    movement has a lot to do to
To the board of CP-ECA              get everyday life smooth for
                                    people with disabilities.
I want to thank Aimo
Strömberg, the board of ICPS        Accessibility      in     living,
and        the       previous       assistance in different ways
representative Valerie Lang         aiming     to   enable      multi
for the support. I want to do       disabled people to participate
my best using my professional       even if they were not able to
skills  and     my    network       act    as     employers       are
connections     to   promote        important issues. Speech
equality and participation in       interpreters also for those with
Europe.                             severe speech problems and
                                    AAC are central issues to get
After getting the degree of a       heard the voice of multi
social   worker    in    Turku      disabled persons.
University I have worked as a
professional and in voluntary       Meeting with the previous
sector        in      disability    representative Valerie and
organisations more than 17          discussions with her gave me
years. Equality in getting          a lot of information about her
education and work has been         way of acting and finding
one of my main interests in my      network partners. It is a joy to

have a good cooperation with       Danish man, the content of
an experienced veteran to          which was to get young
develop and strengthen the         disabled people’s voice heard
work she started.                  in EDF. Young people with
                                   disabilities should get more
                                   chances to get international
                                   experience        in     EDF
                                   organisations and through that
                                   find the international work
                                   interesting and important. In
                                   that way we could see them
                                   later also in EDF and other
                                   international meetings and in
                                   their governing bodies.

                                   I am sure our cooperation will
                                   be important and interactive
                                   and I want to be available for
                                   you. Let’s carry our concern
                                   forward together.
In the centre of the Athens
meeting there were naturally       Satu
the elections. We heard also       May 14th, 2009
an attitude from a young

Greetings from Uganda

I met in London Mr Muwonge         the parents and some children
Godfrey from Uganda. He is         who may understand this, that
the father of a two years old      there is still hope for living.
daughter. He has founded an        HOCEPA will have to be a
organisation called HOCEPA.        voice through which parents of
The main aims of the               children with cerebral palsy
organisation are: to make          speak.
people aware of the situation      I’ve got the permission from
of Cerebral palsy, in particular   Muwonge to publish his story
those who haven’t yet got this     in this newsletter.
same problem, to encourage
the victims of this problem i.e.

THE END OF OUR                     when we reorganised the love
                                   which people had over us.
HAPPINESS                          Because all people who we
                                   invited came and gave us
This story is the life of
Muwonge Godfrey and Harriet        prizes and gifts altogether, but
                                   God was also available on our
Auma towards the birth of their
unprivileged       Namuwonge       wedding who gave us a gift
Blessed Grace who is a victim      and it was a child to come and
of Cerebral Palsy.                 he/she would be named
                                   Blessed and other names
                                   which we could choose. When
Way ago in 2003, I was in the
university and so much             we were still newly married,
                                   we had a baby in 2007 on
desired to marry after my
studies, I made up my mind to      15th/april at 12:30 Am, and this
                                   marked THE END OF OUR
connect my self to Auma
Harriet who was positive to me     JOY IN LIFE, who was a girl
and we decided to make a           and we gave birth under svd
                                   (Normal birth. It was not good
home together in happiness
and get children whom we           news to hear the following
decided to look for names          while the mother was in the
even before we were married.       process of delivery, that the
And the first one would be         baby may not survive, or she
called blessed in order to         may have a damage some
bless our whole generation.        where because it looked like
                                   the mother was failing to
And the plan I had for her was
to be a doctor, because I love     deliver normally but she was
the life and the services which    given more chance to do
doctors can offer to us. I         normal delivery, but after
planned that if our child grows,   some hours of failure, then the
                                   doctor was invited to come
she will have to study
medicine from Europe so as to      and do caesarean operation.
                                   However, the mother gave
acquire the best education
and thus getting a better          birth as soon as the doctor
hospital and good salaries,        arrived, and unfortunately, the
etc. With a lot of decision and    baby wasn’t breathing. The
positive mind to one another,      would be doctor Blessed had
                                   started her life in agony. I
we decided to make a
wedding in 2006 and it was         started praying as the doctor
                                   and nurses were also trying to
made in our local church, we
invited many people and that’s     touch the baby’s back and
                                   later she started breathing

after almost 10 minutes while         couldn’t reach anything grater
applying oxygen tubes, but not        than $400 and we decided to
crying. One nurse helped us to        use all our money to save our
take our baby in the nursery          only child from this tragedy
care, but later she started           which has been declared to
crying and opened her eyes,           her. I had a car which I used
but the next morning, she             to borrow money to do many
started crying bitterly which         things and it was working as a
indicated something wrong,            taxi in Kampala, but later I had
and treatment continued, after        to sell it off in order to get
which the medical director            money to send my daughter to
came and he declared to us            another country to get more
that the child had meningitis.        treatment. Thinking that there
However, we looked at her             is still a step that can be taken
eyes and she could not look at        and the child can get better. I
us straight, yes we didn’t know       later joined to Rev.Dr. Isaac
what this one meant, but to           Nsereko who heads Nserester
the medical persons. More             complex, to help me process
medicines were bought to              hospital documents to send
treat meningitis for two weeks        my child to the UK for more
and when we brought the child         treatment and it so happened,
home, it was declared in her          he helped me and got for me
papers that the child had             hospitals and when I wrote to
cerebral palsy.                       these hospitals, one hospital
                                      wrote to me and referred me
Well we didn’t know how bad           to grate Ormond children’s
the problem was, but truly the        hospital in Central London
problem was so bad, and we            which is referred to as one of
tried to visit different hospitals,   the most specialised hospitals
trying to find immediate              for children in Europe and
solutions as soon as the child        actually it performs so well in
is young, but in vain.                its activities and operations, it
                                      does the most complicated
We were both working in               operations. Doctor Nsereko
different organisations, I was a      decided to sponsor me and we
manager       in    a     certain     made it to London, three of us,
organisation and she was an           me my wife and the child
administrator on government           (Namuwonge Blessed Grace).
under the local government of         With a lot of enquiries with my
Uganda. We continued to               doctor friends, we decided that
work and our total income             a developed country like the

United Kingdom could have a          conversing with him in normal
solution to our problem. To          talks. I one time almost
this far, financially we had         exchanged with one of my
used any resource that we            mothers who was trying to
have ever made and the               give local herbs to my child so
second vehicle which we had          that she could get better,
was     already       put     into   because I knew this wouldn’t
Centenary bank for a loan.           work, one physiotherapist who
Thinking that we are trying to       uses local massage medicines
save the life of our only child.     decided to come home but
                                     asking for $1000 that our child
We have always been advised          will be well in one year also
to pay visits to our parents, in     came and convinced my wife
villages to bless our child, go      to start her practices. We have
and be prayed for and some           moved to different pastors for
times money has been got             prayers but some of them are
from us by the so called man         actually so good that they
of God (Pr. Yiga Augustine in        preach to you and tell you to
Uganda)that our child will get       pray and ask northing from
well, and that if my wife gives      you and they end up giving
two months full salaries, that       you some money, we have
her child will get well. We did      experienced this and we trust
not do that anyway but it was        that     some      people     are
a big temptation to us, what a       genuinely serving God, but
merciless man! But we have           there are also some who are
not seen any changes Later           just not good. 2008 I was a
he sent my us a message that         records officer at St. Frances
God has told him that we             hospital Nsambya and my wife
should go with 100000                still an administrator at the city
Ugandan shillings ($6o) for          council of Kampala.
God to heal our child, but we
didn’t go back there. I can’t        Thinking that there are
forget when one person told          possible solutions, I thought it
me that it must have been a          would be better to go also to
curse, to repay my sins which        the United Kingdoms since
I committed before God and           my wife and Blessed had
this was my friend, later            come earlier on in September,
another one told me that it’s a      so I felt it so necessary to look
punishment from the Lord and         for possible solutions while on
this was a pastor, who wasn’t        the      ground     of    United
praying but while we were            kingdoms. This can only be

answered        by      Doctor     are still having that debt but
Prabhakar’s report which is        we are paying slowly. It was
confidential but not so good,      so fortunate to find SCOPE
only that it had all the truths    over the internet, and sent us
about my child’s cerebral          a representative who was Mr.
problem. I cried and that          Vasu Sagar who used to visit
marked the beginning of my         us at home, encourage us and
tears up to now.                   told us that there were very
                                   many children with our same
Our Life in London:                problem and that they handle
 When we came to London            them in a very special way
2008 between October and           and he gave us some
November we came thinking          materials, he tried to connect
we are to stay in a hotel for      us to Lambeth Children’s
some days and later we go          Centre and these people gave
back home, but we got fellow       us books for the baby and
Ugandans whom we got and           some playing materials.
told us to stay with them and
these people will always be        While in London I learnt many
given a blessing because they      things, which were mostly
cared for us. They gave us         modernisation things, and on
clothes, push chair; books for     my problem, I connected to
the baby, money, shoes, and        many organisations which I
Christians    from     different   found on internet because I
denominations could come           could      access       internet
and pray for us, especially        everyday of the week. I also
Seventh day Adventists from        learnt that Am not alone to
Becton church. Pastors in          face such a problem and that I
London and church members          needed some togetherness
took care of us to an extent       with my fellow parents, just as
that they could give us            face to Face under SCOPE
transport to and from church       does. I can’t say that London’s
so many times they used to         parents and children with
drive us for 13 miles to our       cerebral palsy face the same
place of residence. However,       challenges like the ones I
because of the debt which we       have, simply because, they
left in Uganda, we still had to    are     together     and     the
get what would be help to          government is taking care of
Blessed Namuwonge, we              them for all the needs of their
were sending all the money to      lives. And many other things
repay our debt much as we

                                      I can do to this situation
                                      which I have never
                                      thought about in life that
                                      it could come to me.
                                  •   When          am        being
                                      identified      by      some
                                      people, am identified as
                                      the father or the mother
                                      of Blessed who is a
                                      cerebral palsy case. The
                                      statement is true but, its
Our lives today:                      not a good one.
  • I(the father) cry very        •   Publicly whenever we go
      many times a day and at         to occasions and church
      the moment, I feel my           services, we are asked
      heart has a problem of          for the baby, how far
      pain, and am worried            and when we meet the
      about this. One time I          age Mets of our child,
      was ashamed when I              we look back home
      cried in the bus while          where we left her and
      travelling          from        we start to remember
      Streatham to Stockwell          our situation.
      (London).           This    •   We can hardly go to
      embarrassed      me    in       children        ceremonies
      public and no one could         because we can’t Lough
      know why I cried. I don’t       like parents.
      want to cry and I never     •   My academic goals and
      expected I could but it         that of my wife ceased
      comes automatically.            and were postponed,
  • The mother is becoming            she       had       got     a
      stronger and stronger           scholarship but she was
      than me because she is          unable to attend the
      always               with       course fully. I also had
      Namuwonge,            but       another study chance
      because am so busy              but I never bothered,
      looking for food, when I        thinking that I need to
      find her asleep, I want         fight for my child’s health
      her to wake up and she          first, but in vain.
      normally smiles at me       •   I have never sat before
      and this still rises my         a consoler to talk about
      tears. I don’t know what

  my life and issues in           think that if we talk to
  detail, may be I may            more people about our
  stop      crying     daily      lives, maybe there may
  because even now am             be a change.
  just crying but strong        • Sometimes I look at a
  after tears, am not             person and I start
  joking. I feel like am a        thinking that this person
  much disliked person            doesn’t love me and
  before God and that I           think am a cursed fellow
  am the only one who             in life….However much
  deserves to receive             this person may befriend
  such a punishment. Yes          me, and am so keen on
  the reality of life is, I       what people talk while
  don’t know what people          with me.
  in my family will always      • My wife thought I was
  talk, because there has         going to leave her, but
  never been such a               this is reducing in her
  person in my family.            this has made her
• It’s so unfortunate that        uncomfortable        always
  this baby of mine is a girl     because she always
  and I imagine who will          thought that I would get
  be helping her when she         another wife to produce
  is    in   her    monthly       proper children. This has
  problems in her whole           always been put in her
  life to the date well           by her elderly friends
  designed by the lord to         especially mothers. This
  take her.                       discomforts her time to
• Unfortunately I and my          time, thinking that she
  wife are no longer stable       would       loose       her
  at our jobs and I might         marriage etc and peace
  have lost mine already          could hardly be at home,
  but looking for what to         just because of bad
  use feed my child.              mentality. I no longer
• We negotiated with the          have any activity/hobbie
  mother to have another          which I enjoy from the
  child but we are still in       bottom of my heart,
  grate fear of the same          much as I am a talented
  tragedy to happen to us         musician       and        a
  , we are just some how          piano/keyboard player
  not so positive to the          but I play it on Sundays
  situations, however we          because         it’s      a

  programme for me, not         we may receive while
  because its joy and           we are in a bid to help
  happiness that I rejoice      other people who cry
  so much.                      like me at night and
• I no longer have any          during day at any time in
  activity/hobbie which I       life.
  enjoy from the bottom of    • There is a plan to take
  my heart, much as I am        Namuwonge to USA for
  a talented musician and       selective            dorsal
  a piano/keyboard player       rhizotomy if we get what
  but I play it on Sundays      the     hospital    wants,
  because         it’s   a      because its too much on
  programme for me, not         us, we actually need
  because its joy and           $50,000 and we don’t
  happiness that I rejoice      have it. If we get
  so much.                      assistance , we are
                                more than ready to go to
 What we expect in Future       ST.Loius           Hospital
• It’s to the best of our       Washington University
  understanding that we         and we already have the
  are not alone, but we         documents for that if we
  need to share our lives       are granted that chance.
  with other people all       • As a father I expect to
  over the world so that        try to work hard to feed
  we learn from them and        Namuwonge and her
  that they also learn from     followers and the mother
  us.And we want to start       plus me.
  this in Uganda. Cerebral    • I also think that I need a
  palsy centres are the         car to be driving her
  main plans we have if         whenever I will be willing
  we get any assistance in      to take her and I want to
  our goal, because this        start praying for her. And
  will not only be for us,      I will be always taking
  but for all the suffering     her out to teach people
  children and patients.        Cerebral palsy effects
  But our government has        and where necessary
  no program to help us.        people will have to
• There is more that one        evidence my teachings
  plan we have in life but      by looking at her, so we
  mostly they will depend       cant be moving in taxis.
  so much on the help that

Who is there for Godfrey,         combine together and talk
Harriet   and    Blessed          about our issues, ask for
Namuwonge?                        help     if   possible,     do
                                  developing            projects
To     the    best     of   our   together, advocate for our
understanding, God can use        children          in        all
you to help me you may think      circumstances, and a grater
you don’t have money to help      deal to try whatever we can
me, but I need a talk from you.   at any level of our children
A word of encouragement. I        to make them improve their
can’t get tired of listening to   lives.    This     does    not
good news from you in any         discriminate race, Religion,
way you can and to assist me      Tribe, financial status, blood
in helping people who are         group, or HIV status, but we
going through the same            are all commonly affected
situation like we are going       by the pain due to the love
through.                          over our children, those
                                  who      are   affected     by
Muwonge            Godfrey’s      Cerebral palsy. And the
declarations:                     impartation they have to
‘Am down to earth and             others who do not have
humbled more, by this             Cerebral palsy.’
situation. But I thank God
that    I  can    still  say      And I think, ‘Togetherness
‘somebody can be helped           for the forward step’ is the
by me’, while we are in the       best solution for us all.
same problem. I haven’t
talked to many people who
have experienced such a           ICPS is preparing to send
tragedy but the few that I        Johannes Verheijden and
have talked to haven’t yet        Aimo Strömberg to Uganda to
recovered      from      the      see what the local needs are
damages on their hearts,          and what can be done to help
finances, Future plans etc,       parents with a child with CP in
but I think am in the same        Uganda.
injury, therefore, we can

Forthcoming meetings

Seminar on Performing Arts       Harrogate International Centre
"Travelling              on"     United Kingdom
6    -    10    July,   2009
Amalion Residential Centre in
Marousi, Athens
                                 Australiasian Academy of
International      and      IX   Cerebral             Palsy
Ukrainian Congress of Child      and          Developmental
Neurology                        Medicine        Conference
under     the   auspices    of   (AACPDM)
International Child Neurology    "Getting a good start"
Association       –      ICNA    3    -   6   March,   2010
“Overview on the Nervous         Christchurch     Convention
System Disorders in Children”    Centre
                                 New Zealand
Kyiv, Ukraine, 9–12.10, 2009
American    Academy      for     usacpdm2010
Cerebral      Palsy     and
Developmental       Medicine     8th International Congress
63rd Annual Conference           on Cerebral Palsy
"Frontiers of Innovation:
Combining Technology and         An open minded approach to
Therapy      to     Improve      therapeutic options
Outcomes"                        13 - 16 October 2010,
23-26    September,    2009      Ljubljana, Slovenia
Phoenix,   Arizona,     USA                   Scientific         Programme
                                 Prof. dr. Milivoj Veličković
8th   Congress  of    the        E-mail:
European       Paediatric
Neurology         Society
September 30 - October 3,

Greetings from the President of USA

This e-mail was sent to me, because I sent the President of USA
congratulations and told he has a good plan to improve the
situation of people with disabilities. I said I sincerely hope his aim
will come true. I said also that I wish he uses his authority in
disability politics outside US, too. The Guiding Principles are
Strengthen Access to and Improving the Quality of Health Care, Promote
Access to Community Living Services, Protect Civil Rights, Expand
Educational Opportunities and Increase Access to Employment.

     Good afternoon,

     You are receiving this email because you signed up at
     My staff and I plan to use these messages as a way to directly
     communicate about important issues and opportunities, and today I have
     some encouraging updates about health care reform.

     The Vice President and I just met with leaders from the House of
     Representatives and received their commitment to pass a comprehensive
     health care reform bill by July 31.

     We also have an unprecedented commitment from health care industry
     leaders, many of whom opposed health reform in the past. Monday, I met
     with some of these health care stakeholders, and they pledged to do their
     part to reduce the health care spending growth rate, saving more than
     two trillion dollars over the next ten years -- around $2,500 for each
     American family. Then on Tuesday, leaders from some of America's top
     companies came to the White House to showcase innovative ways to
     reduce health care costs by improving the health of their workers.

     Now the House and Senate are beginning a critical debate that will
     determine the health of our nation's economy and its families. This
determine the health of our nation's economy and its families. This
process should be transparent and inclusive and its product must drive
down costs, assure quality and affordable health care for everyone, and
guarantee all of us a choice of doctors and plans.

Reforming health care should also involve you. Think of other people who
may want to stay up to date on health care reform and other national
issues and tell them to join us here:

Health care reform can't come soon enough. We spend more on health
care than any country, but families continue to struggle with skyrocketing
premiums and nearly 46 million are without insurance entirely. It is a
priority for the American people and a pillar of the new foundation we are
seeking to build for our economy.

We'll continue to keep you posted about this and other important issues.

Thank you,
Barack Obama

P.S. If you'd like to get more in-depth information about health reform
and how you can participate, be sure to visit

                      This email was sent to
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     The White House — 1600 Pennsylvania Ave NW — Washington, DC 20500 — 202-456-1111

                     Best wishes to all of you

                 Aimo Strömberg
                      tel. +358 400 421652

“A Global Status Quo on Cerebral Palsy, With a View to the Future
5 – 7 November, 2009, Utrecht, The Netherlands

Please fill out the registration form using CAPITAL letters. One form per participant.

Participant: Last Name:                                         First Name:


Organisation / Company:

Mailing Address:

Postal Code:                   City / State:                           Country:

Phone:                                  Fax:

E-mail address:

Symposium Registration Fee

Professional                       € 150

Parent / Adult with CP                     € 75

One-day registration fee

Professional                       € 50

Parent / Adult with CP                     € 25

Day(s) on which you attend this symposium:           Thursday       Friday        Saturday

Payment Methods:
   The amount has been transferred to:
Bank account number: 36 42 72 112
Rabobank Utrecht
Beneluxlaan 31-33
NL-3526 KK Utrecht
Swift code: NL2U

   The amount has been transferred to:
Bank account number:
Mees Pierson
Postbus 370
IBAN Number: NL06.FTSB.0245.2555.32

Important! Please state your name and symposium on Cerebral Palsy” on the

Date: ______________________________

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    The Dom tower, over 600 years old and the highest mediaeval tower in the


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