The story of how we became the Prader Willi Syndrome National Association in Chile
Chile is the longest country in the world with 4.329 kms from north to south (without considering Antartica), and at the same time one of the narrowest, with an average of 180 kms wide. Its population (2016) is 18.214.009 with 212.368 babies born this year. If we consider that the PWS prevalence is 1 every 15.000, we could presume there should be about 1.214.000 people with PWS in our country.
Even though at the moment we are far behind in our capacity to identify the families with individuals with PWS, we have been constantly working to improve this condition since we started to be a formal association. This is our story from the very beginning.
In 1991 there appeared the first article about a girl with PWS in a local newspaper. This was the first move to find other families with a child with PWS, and soon after, many other families joined us. Some years later a mother living in the north was interviewed in a TV program, so more families wanted to learn about the syndrome and get in contact, thus giving birth to the first parents organization.
In 1999 a group of ten families created the “Asociación Nacional del Síndrome de Prader Willi” base in Santiago, and soon we became members of IPWSO.
We started this association with the aim of identifying as many families having a child with PWS as possible, so to improve their quality of life, provide support to the families, and also to inform and increase awareness about the syndrome. At that time, efforts were mainly made in Santiago.
Dr. Fanny Cortés was very significant in the achievement of becoming a formal association
and she actively supported the families and the recently initiated organization, and she has continued up to now being of invaluable help.
Within the next four years we had 60 families registered, and in 2002 we organized together with IPWSO the first Prader Willi Syndrome Latin American Conference in Chile; a tremendous opportunity to have specialized professionals giving talks and then to communicate information along the country. The presence of Giorgio Fornasier was very inspiring and meaningful to strengthen our will to continue working hard. How to forget his marvellous song to close the assembly?
In the following years we persisted in supporting families, giving advice on different matters for a better management. We contacted health authorities to try to include PWS as a significant disability, and to have medical reimbursement of growth hormone treatments, unfortunately for the moment, without success.
At the same time we started developing some technological resources. We initiated a database and created the website. The social networks have helped families to be in contact with the association, thus addressing their questions, and requesting information.
As National Association, we have been very consistent in complying with general assemblies twice a year, publishing formal announcements in a local newspaper in due time and keeping up-to-date accounting and legal documents. This enables us to receive donations as a charitable foundation, a condition which is most important to keep active, as it has been a key procedure to obtain funds to help our families by means of translating and printing materials, organizing workshops and conferences. It is worthwhile mentioning two seminars on behavioural management with live streaming and the translation of a DVD for school guidelines.
This year we have faced a new challenge, that is to form a “country network” by dividing
our territory in three zones: The North Zone with base in Antofagasta, the Central Zone in Santiago and the South Zone with base in Temuco. So far and in addition to Santiago, we have only initiated the South Zone with Carlos Molinet, our former President, as Coordinator. In October, we had a two-day meeting with ten families from different cities in the South and they were asked to fill in a survey. We also reviewed with them information regarding main aspects of PWS and management of behaviour and food security. We answered questions and shared experiences. We nominated parent delegates for each city and provided them with a folder with printed materials and a pen-drive full of helpful information when visiting professionals caring for their own children, as well as hospitals, medical staff, regular schools and teachers, special education schools, and health centers for treatments. They were also requested to report new families to the Coordinator. It was so cheerful to see so many grateful and happy faces at the end of the meeting, as they feel they are not alone any more on this journey and that now they stand more confident as part of a group of people where there is learning, support and love.
We will soon reproduce this scheme with the North Zone, and as soon as we gather families from different cities we will have the formal meeting to nominate parent delegates.
Hopefully by the end of next year we will have a “country network” fully active and, therefore, we expect to increase the number of families registered in our National Association database and will be able to help and support them We also look forward to having most professionals all along our country, registered and well aware of the importance of an early diagnosis and treatment of individuals with PWS .
Santiago de Chile, November 17, 2016