Experiences of a Hungarian NGO from an EU project

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Experiences of a Hungarian NGO from an EU project
Prominent Charity Organization
MWSzT
H-1095 Budapest, Viola u. 19., Hungary,
Mailing address H-1022 Budapest, Pajzs u. 5.,
Hugary tel [phone]
Hungarian Tax Number 18249255-1-43 IBAN HU21
1170 5008 2046 6529 0000 0000
http//www.williams.ngo.hu
Executive President Pogányné Bojtor Zsuzsanna,
e-mail pogany_at_williams.ngo.hu
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Mission Statement

• To help all individuals with Williams syndrome
  and those with similar characteristics to reach
  their full potential.
• To reach out to individuals with Williams
  syndrome characteristics and provide support and
  information regarding the syndrome.

• To organize gap-filling services, conferences,
  and camps for developing skills.
• To increase awareness and understanding of
  Williams syndrome by disseminating timely and
  accurate information to families and
  professionals.
• To support research into all facets of the
  syndrome, and the development of educational
  materials regarding Williams syndrome.
• To work with other support groups around the
  world, with the medical and educational community
  at large and with similar non-profit
  organizations across Hungary.
• The Association works as a non-profit, tax-exempt
  corporation. It derives support primarily from
  grant applications, private donations and
  fund-raising projects.

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Supports the realization
The Phare Access Social Micro Project Programme
of the European Union, No. 5748102-0204-0041
with the cofinancing of the Hungarian Republic

• Title Complex Programme to Foster the Social
  Inclusion of People with Williams Syndrome
  (acronym FIPEWS)
• Two main directions
• To support social and healthcare activities and
  services targeting social reintegration
• To strengthen the operational independence and
  capacity of the supported NGO.

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Goals and results 1.

• To strengthen the autonomy of families bringing
  up children with Williams syndrome (WS) and
  similar symptoms, organizing gap-filling
  services. We want to introduce and broaden our
  educational and vocational programmes, improving
  the habilitation - rehabilitation of these people
  with accumulated disabilities, to our members who
  live scattered in the country. For these
• Health protection, habilitation, developing
  skills to avoid social marginalization. These
  development programmes, including
  hydrotherapeutic and rehabilitation gymnastics
  (HRG) and sensomotor training TSMT), special
  educational and occupational therapy, music,
  drama and art therapy, special language and music
  teaching, are based on claims of the families and
  experts and on the special characteristics of WS.
  
• Enhancement of community and our NGO. The project
  also provided possibility for this vulnerable
  group to increase their partnership to compensate
  their social disadvantages by learning and
  exchanging experiences. All of these could help
  to lead to a life without having to rely on
  others, while actively participating also in
  social life. Therefore, we organized different
  kind of meetings, and maintained our internet
  communication service.

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Goals and results 2.

• Increasing awareness, disseminating information.
  We continued our activities
• Translate new information
• Maintaining and developing our internet home page
• Publishing the Hungarian version of the new
  American WS Parent Handbook (Fulfilling Dreams -
  A handbook for parents of children with Williams
  syndrome By Barbara Scheiber)
• Distribute publications
• Special Parent Course in autumn
• Developing trans-national partnerships,
  participate in European civil networks. We
  participated in the work of the next
  international organizations
• Federation of European Williams Syndrome
  Associations (FEWS) - eg maintaining the
  official home page
• European Organization for Rare Disorders
  (EURORDIS) participating in a pan-European
  survey
• Supporting scientific and research activity.
• Cooperation with Medical Institutes
• Cooperation with research institutes on the area
  of psychology, pedagogy, and cognitive science.

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Goals and results 3.

• Organization of recreation and leisure
  programmes.
• Organization of useful and entertaining
  programmes in the summer camp
• And during the year
• The parents will be able to advance a higher
  quality of life for their children, getting
  closer to equal opportunities, as a final result
  of our project.

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Sustainability

• Follow-up
• The complex training programmes will improve the
  general condition of participants and together
  with the disseminated information they will
  significantly enhance the abilities and
  capacities of the children and their families
  resulting a substantial impact on our target
  groups.
• The distributed information about our experiences
  and methods using video films made during the
  trainings will result multiplier effects on
  similar organizations dealing with handicapped
  groups.
• Our voluntary helper university students (special
  teachers, psychologists, and medical students)
  will have also much more information about
  Williams syndrome.
• Financing after the EU funding ends - Our grant
  applications will be also easier after a
  successful realization of a relative larger EC
  grant, and use it as reference.