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Wandafonds

 

 
 

 

 

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.