The Federation of European Williams Syndrome Associations (FEWS)

FEWS Activities | activités | actividades | attivit_ | actividade | Aktivit_tenCreated in 2001, the Federation of European Williams Syndrome Associations (FEWS) is a federation of patient groups sharing the common goal of improving the lives of Williams syndrome patients. Williams syndrome (also known as Williams-Beuren syndrome) is a rare disease caused by an abnormality in chromosomes, and shows a wide variation in ability from person to person. It is a non-hereditary syndrome that occurs at random and can affect brain development in varying degrees, combined with some physical problems ranging from lack of coordination, slight muscle weakness, heart defects, and occasional kidney damage. Normal development is generally delayed.

‘The need for a pan-European coordination of scientific research and family support triggered the founding of FEWS,' says Suzy Cooper, a founding member of FEWS and ex-member of the UK Williams Syndrome Foundation. ‘The idea had been discussed for some time within the UK foundation but no decision had ever been made. It was the Italian federation, driven by Leopoldo and Cintia Torlonia, who made the firm proposal.' But soon the founding members found out that creating a pan-European federation was not that easy. ‘We had to form a working committee, to decide on a mutually supportive and satisfactory constitution, to register that constitution with the EU as a recognised charity, and to register and enrol a significant president/sponsor. The administrative part seemed to last forever, as well as the EU recognition process, but I think it is fair to say that the most significant bonding feeling came during our first meeting (with only 4 member countries), when we all realised the marvellous potential of creating a European community,' says Suzy Cooper, now President of FEWS.

Lukas - Williams syndrome patient | malade | paciente | paziente | PatientThe goals of the federation, which counts 13 member countries to this date, are:

  • to raise international awareness of Williams syndrome

  • to build and reinforce links with the European community

  • to promote educational and social research on the disease

  • to provide learning opportunities and holiday opportunities for patients

  • to raise funds for all of these.

Though it was originally on its list of goals, the federation recently decided not to pursue scientific coordination as one of its main objectives. ‘There is a fair amount of research going on in both the UK and the USA. The UK foundation currently sponsors research into genetics. I think the fact that Williams syndrome shares common characteristics with autism is useful from the point of acquiring funds for research,' states Suzy Cooper. ‘I don't think FEWS was effective in working directly with the scientific community, which is too well aware of the various results of research projects on Williams syndrome.'

FEWS Activities | activités | actividades | attivit_ | actividade | Aktivit_tenFEWS is very keen on their international summer camp projects, which are EU funded and hosted by a different member country each year. ‘So far there has been one in Trømso (Norway) and one in Hungary. This year's camp will be held in Sweden. Volunteers are recruited on a national level. My own son was a volunteer for the first camp in Trømso. Each camp has a different theme with all sorts of activities for patients. So far they have been extremely successful,' says Suzy Cooper. She declares that since joining Eurordis, FEWS has learned about other communities and federations and the way they face and solve their problems. ‘It has enabled us to meet families, charities and scientists from other areas and to network with them.'


This article was previously published in the July 2007 issue of our newsletter.
Author: Nathacha Appanah
Photos: patient © Christina Leber/Eurordis; activities © FEWS

Page created: 06/09/2010
Page last updated: 06/08/2013
 
 
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