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Operation of
Dutch Association Wandafonds and its Polish equivalent Wanda
Foundation.
Wandafonds
Foundation for aid to Polish CP children
Address:
Graafdijk Oost 48,
2973 XC Molenaarsgraaf, The Netherlands
E: info@wandafonds.nl
W: www.wandafonds.nl
Chair – Eva Kooyman
Activities of Wandafonds and Wanda Fundacja
From 2003 Wandafonds has organized symposia, courses in Poland
and internships for Polish specialists in the Netherlands to
stimulate the exchange of knowledge about the diagnosis and
treatment of CP between both countries.
Wanda Fundacje was founded in 2005 as a sister organisation in
Poland. We cooperate with several rehabilitation centres.
We cooperate with Dutch organisation of handicapped and their
parents BOSK and with the Parents Association SRDPM in Warsaw,
which we helped to form. We cooperate with Ozarowska Association
of handicapped youth.
The people
The Medical Committee in the Netherlands.
The team visiting Polish centres:
The chairman: Professor and Doctor of Medicine Jules Becher,
Free University Medical Centre in Amsterdam - VUMC
Ms. Drs. Petra van Kampen (MD) VUMC
Ms. Drs. Els Spaargaren (PT)
Ms. Drs.Katinka Folmer ( MD) R. Centre Trappenberg, Huizen
Ms. Drs.Nienke Baker (MD) R. Centre Trappenberg, Huizen
Ms. Lilian Disselhoff (PT) R. Centre Trappenberg, Huizen
Mr. Drs. Eugene Raemeckers (PT) Reh. centre St. Franciscusoord,
Valkenburg a/d Geul
Mr.Koen van Dijk (PT) Reh.centre Heliomare, Wijk aan Zee
Tom Gort( orthopaedic technician), Noppe Orthopedie BV
Noordwijkerhout
Eva Kooijman – Piskorz, Wandafonds
The Medical Committee in Poland
Mr. Marek Jozwiak, Professor and Doctor of Medicine, coordinator
of the project in Poland,
Dept of Orthopaedics and Paediatric Traumatology and the
Biomechanics of Movement Laboratory of the Karol Marcinkowski
University of Medical Sciences in Poznan
Mr. Slawomir Snela, Doctor of Medicine, Professor of
Physiotherapy of the University of Rzeszów Head of the Ward of
Orthopaedics and Traumatology of the Provincial Hospital no. 2
in Rzeszow
Mr. Dr.Marcin Bonikowski – Head of the department of
Orthopaedics and Ms.dr. Anna Czernuszenko head of the
rehabilitation Department at the Mazovian Centre of
Neuropsychiatry and Rehabilitation for Children and Youth,
Zagórze near Warsaw
Ms. Ewa Jagiello Parents Association SRDPM in Warsaw
Ms.Dr. Barbara Sinczuk Ozarowska Association of handicapped
youth
Wanda in 2003
In 2003, professor Becher together with his co-workers and the
members of the board of Wandafonds visited the Warsaw centres in
order to get to know the needs of the Warsaw rehabilitation
centers.
Wanda in 2004
Two times in 2004 Wandafonds invited specialists from the Warsaw
centres (doctors, physiotherapists, orthopaedic technicians).
The specialist came to visit the Free University Medical Centre
in Amsterdam (VUMC) for four-weeks practices. Additionally, six
Polish children were treated at that time. The parents of the
children lived close to the hospital. After the four-week
treatment (diagnosis, BTXa injections, intensive physiotherapy,
scales) in which Polish specialists also took part, the
condition of the children greatly improved. In total 13
specialists took part in those visits.
In order to continue the improvement of the standard treatment
of these and other children in Poland, it has been agreed that
the Dutch medical team will train the Polish medical/paramedical
team during the courses and workshops in Poland.
In order to enable a good diagnosis of CP, we bought a gait
laboratory SYBAR for Zagórze.
Additionally, this year we bought various equipment needed for
rehabilitation.
In June, professor Becher took part in a congress organized by
the Polish Association of Rehabilitation in the Professor Weiss
Centre of rehabilitation in Konstancin. Two hundred doctors from
all over Poland took part in the lectures of the Dutch team.
After the congress, a four-day course and workshops at the
Mazovian Centre of Neuropsychiatry took place in Zagórze. The
Dutch team also took active part in it. The gait laboratory
SYBAR was used for the first time.
Wanda in 2005
In 2005, a Dutch medical team visited Poland twice, once for the
course/workshop in Zagorze and once for medical congress.
Wanda in 2006
26th and 27th of February the Dutch team visited Hospital no. 2
in Rzeszów for the first time, where conversations with
professor S. Snela and university representatives took place in
order to assess the needs of the centre. The visit was combined
with lectures carried out by Dutch and Polish assistant
professors.
From 28th to 29th of February, a workshop and course at the
rehabilitation centre in Zagórze near Warsaw took place, in
which the Dutch team took part. Among the participants were 20
doctors, 40 physiotherapists and 21 orthopaedic technicians.
12th – 14th of June, the Dutch team participated in an
international congress – “East European and Mediterranean
Meeting on Cerebral Palsy and Developmental Medicine”, organized
by professor Józwiak in Warsaw. A session for parents of
children with cerebral palsy treated in the Warsaw centres was
organized for the first time during the congress.
After the congress the Dutch team visited the Medical Centre of
the University of Poznan in order to assess the needs of the
centre. The visit was combined with lectures carried out by
Dutch and Polish lecturers.
Esmac in Amsterdam was visited by Polish specialists.
Wanda in 2007
Between 15th – 26th of January, two weeks internship was
organized for Polish medical and paramedical team at the Free
University Medical Centre in Amsterdam - VUMC and R. Centre
Trappenberg. The invited teams were from Poznan University
Medical Centre (6 people: orthopaedist doctor, rehabilitation
doctor, two physiotherapists, an orthopaedic technician and a
doctor interpreter) and Hospital no2 in Rzeszów (5 people:
orthopaedist doctor, rehabilitation doctor, two
physiotherapists, orthopaedic technician).
In March (19th – 23rd), a workshop and course took place in
Zagórze with the participation of the Dutch team for 22
doctors/physiotherapists and 22 orthopaedic technicians. During
these workshops, 31 children were examined, the diagnosis and
treatment were given. It turned out that the programme was too
intense (it lasted for 4 days), and it was decided to limit the
number of children in future sessions. A session for parents of
children with cerebral palsy treated in the Warsaw centres was
organized again during four-day workshops combined with a
course.
In June (17th – 19th June), a workshop and course took place
with the participation of the Dutch team at the Medical Centre
of the University of Poznan. A team of 32 doctors and
physiotherapists as well as 6 orthopaedic technicians took part
in it. Professor Becher visited the operating room and
demonstrated the technique of applying botulinum toxin to the
upper limb (for the first time in Poland). Seven children were
examined during the workshops and the diagnosis and treatment
were given. Botulinum toxin was applied to 5 children in the
operating room with the participation of professor Becher,
Doctor K. Folmer and Polish specialists; two children had it
applied to their upper limbs.
In 2007 (Athens September 07) and in 2008 (Ankara 08), we made
it possible for doctors working in the gait laboratory in Poznan
and Zagórze to take part in the international congress ESMAC.
Wanda in 2008
In March (17th – 19th), a course with the participation of the
Dutch team took place in Rzeszów.
The team consisted out of 22 doctors, 32 physiotherapists and 10
orthopaedic technicians, who participated in the course. Six
children were examined during the workshops and the diagnosis
and treatment were given. The Dutch team introduced the course
evaluation form for the first time in order to find out the
needs of the trainees.
A session for parents of children with cerebral palsy treated in
Rzeszów was organized again during three-day workshops combined
with a course. In May the parents from 3 Warsaw rehabilitation
centres, who during the past years took part in the workshops
organised by Wandafonds, decided to form the Parents association
S.R.D.M. (Stowarzyszenie Rodziców Dzieci z Porazeniem Mózgowym)
In June (19th – 21st), also a course with the participation of
the Dutch team took place in Zagórze near Warsaw. Seventy-five
people took part in it, consisting out of 26 doctors, 43
physiotherapists (in this number there are a few special
educators) and 5 orthopaedic technicians (in that 4 from Rzeszów).
Five children were examined during the workshops, and the
diagnosis and treatment were given; orthotic support was made
for three children. The course evaluation was carried out. A
session for parents of children with cerebral palsy treated in
the Warsaw centres was organized again. The session was tinged
by the fact that on 13th May the parents from the Warsaw centres
decided to unite and set up the first Association of parents of
children with cerebral palsy in the Warsaw province. In the mean
time the centre in Zagórze became the leading centre in the
Warsaw province, it was settled that it would take upon itself
the basic courses according to the Dutch methods and the Dutch
team would take part in the advanced courses.
Wanda in 2009
In March (22nd to 25th) we invited professor Snela, to visit
professor Jules Becher at the VUMC and dr. Katinka Folmer in
Trappenberg (Botox and pump management).
The Parents Association S.R.D.M. has been successful with their
photo reportage exhibition “Look forward with hope” which took
place in Polish Sejm ( Polish Lower House). The president of
Sejm has opened the exposition himself and accepted the petition
on behalf of parents.
They demanded that same rights as other parents of the
handicapped children in EU.
Media were very interested in this matter and gave great
coverage.
The course/workshop in Rzeszow took place from 10th till 13th of
May 2009. A large part of the course was devoted next to
diagnostics and treatment of CP to the subject of Baclofen
pumps. The details of the course follow after obtaining them
from Rzeszow.
Plans for the future
2009 t/m 2012
Course and workshops
In October 2009 (12th-14th) we plan a course/workshop in Poznan.
In November 2009 (2nd -6th) the Polish team will visit Holland.
Forming of the multidisciplinary team in Polish rehabilitation
centres.
During the meeting of the Medical Comity in Warsaw in May of
2009, it was proposed that the centres who wish to cooperate
with Wandafonds in the future will need to have a medical team
which consists of: rehabilitation MD, orthopaedic surgeon,
paediatric neurologist, ,paediatric occupational therapist,
paediatric physiotherapist and orthopaedic technician.
This team is also necessary in a project of “The assessment of
the treatment of Cerebral Palsy with multilevel botulinum toxin
with of children with Cerebral Palsy ” which will shortly start
in Zagorze and Ozarowska. Wandafonds has already given means to
buy this expensive medicine to those centres. The protocol of
the trial was formulated by Doctor Anna Czernuszenko and Martin
Bonikowski from Zagorze following the criteria of the Dutch
Medical team.
It concerns a group of children from the centres who are
cooperating with Wandafonds.
The purpose of the trial is to obtain the acceptation of the
high doses of BTXA in Poland and as end result covering all of
the costs of BTXA totally by the insurance company NFZ.
Exchange of the knowledge
During the meeting of the Medical Comity in Warsaw on May the
13th, it became clear that there is a necessity to form a
multidisciplinary team in every rehabilitation centre. This team
should diagnose and treat Cerebral Palsy. Medical Comity also
wants the rehabilitation centres, who wish to cooperate with
Wandafonds in the future, to form consensus concerning use of
BTXa.
Representatives of the Centres will set up a plan concerning the
place of the meeting and give forth eventual wishes.
It was proposed that twice a year a Dutch team will visit Poland
and at least once a year the Polish team will visit the Dutch
rehabilitation departments. The members of the Polish team needs
to have an advanced level of English.
Parents of CP children and CP Youth organisations
We intend as much as possible to support those organisations in
the R. Centres which are cooperating with us.
In November (5th-7th) a symposium “A global status quo on
Cerebral Palsy, with a view to the future” is being organised in
Utrecht by International Cerebral Palsy Society and BOSK. We
invited some of the representatives of the Ozarowska handicapped
youth organisation to visit Holland and participate in the
congress.
Equipment and medicines necessary for the treatment of CP
children
Due to the fact that appropriate equipment and medicines
necessary for treatment of CP, often aren’t compensated by
insurance company NFZ our foundation will help, whenever we are
able, in obtaining them.
The costs of the project from 1st of January 2003 until 1st
of June 2009
The total costs of of the project in five rehabilitation
departments in Poland and the parents and youth organisations
were 339.061,47 € .
We also have specifications per post ( rehabilitation
departments, organisations) and can give it at demand. |
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