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Lowe
Syndrome Meeting in Formignana, Italy - September 9th-11th 2007
Convegno Internazionale sulla Sindrome di Lowe
09-09-2007 Teatro Comunale di Formignana (FE), dal 6 al 9 settembre 2007
La
Sindrome di Lowe è una rara malattia genetica che colpisce i maschi e causa
disabilità fisica e psichica. Si chiama anche Sindorme Oculo-Cerebro-Renale.
L'Associazione Italiana Sindorme di Lowe organizza presso il Teatro Comunale di
Formignana (FE) un convegno internazionale dal 6 al 9 settembre 2007. Per
informazioni contattare tel/fax 0533-59587 cell. 346-8633242 e-mail
formignana.aislo@libero.it
Lorrane Thomas, chair of the UK Lowe Symdrome Trust and family were invited to the Italian AISLO (Associazione Italiana Sindrome di Lowe) that was initiated by Anna Maria Dinelli president of AISLO and organised and funded by the community of Formignana.
The
meeting was held in the local theatre (Teatro
Comunale di Formignana) and the families were also invited to a
special mass at the church by cardinal Tonini with local dignitaries. Also
invited to the meeting were Fabrice Riou, President of the ASL
(L'Association du Syndrome de Lowe) France and Debbie Jacobs who is
President of the LSA (Lowe
Syndrome Association USA). The community had also organised translators, a
creche for the children and a very social agenda. The familes stayed at a hotel
in nearby Copparo.
The LST, Lorraine, Andrew and Oscar Thomas would like to thank everyone involved and to say how overwhelmed we were by the welcome and hospitality, not mention the incredible generosity and organisation.
Translation of press article: Download pdf
The
cardinal opens a medical meeting
Formignana. The heroism of a mother and father in helping their son afflicted with a rare disease. The help of volunteers, of Italian and foreign researchers, of schools and institutions for a subject for which it is difficult to give more effective answers.
This is the theme of an international convention on Lowe’s syndrome which will take place at the communal theatre of Formignana from today until Sunday, organised by the Santo Stefano Association of the parish of Formignana, along with the Italian Lowe’s Syndrome Association (“Aislo”, of which the national president is Anna Maria Dinelli, the mother of Stefano, who has the disease) and along with the Mario Negro Sud di Chieti Consortium, under the sponsorship of the commune of Formignana.
[The
convention on] the pressing topic has been preceded by an extraordinary local
council meeting which took place a few evenings ago where the debate focused
on the problem of recognising the disease and the necessity of diagnostics and
funds for scientific research. Underlining
the importance of the convention, priest Don Rosario Bonaccio announced that
“on Thursday, the Cardinal Emeritus of
The
researcher from Abruzzo, Antonella De Matteis, summarising the research, said
that, among the speakers, “The speech of Professor Robert Nussbaum, who
discovered the syndrome in the
Up to now, central governments have given very little for research on this syndrome, but the people present [at the local council meeting] said that, in contrast, “in Emilio Romagna, the regional government, the provincial government and the communes are allocating significant funds to aid [the research]. Stefano and his mother are examples for the area.”
The
scholastic director Giovanni Roncarati and the teacher Rita Cabrini
highlighted aspects of scholastic integration and the educational project of
the comprehensive
Franco
Corli