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2
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- A.I.S.EA – The Italian Association for the Alternating Hemiplegia
Syndrome is a non-profit organization funded on April 30th, 1999.
- The main site of AISEA is in Verderio Superiore, province of LECCO, near
Milan, in the north of Italy.
- At present it counts 56 members, mainly parents of AHC children.
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- The main goals of A.I.S.EA are:
- inform and support the AHC Italian families;
- spread the knowledge of AHC between the doctors and the operators in
the assistance, rehabilitation and education fields.
- promote and fund the research; to organize the participation of the
Italian families in any research project for AHC
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- At present 26 AHC families are members of A.I.S.EA: the youngest case is
1 year old, the oldest is 39 years. The severity of the disorder greatly
differs from one another.
- We have known them thanks to their doctors, neurologists or pediatrics,
but mainly through published articles and Internet
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- The Board of Directors is composed of three people:
- Rosaria Vavassori (Milan), President
- Laura Margherita (Rome), Vice President
- Vittorino Bocchi (Milan), Trustee
- Ms Lorenza Papini is the Secretary and Treasurer
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- The Medical Board:
- Prof. Federico Vigevano, Neurology Division - Pediatric Hospital
“Bambino Gesù”, ROME
- Dr. Giuseppe Gobbi, Infantile Neuropsychiatry Unit - Maggiore Hospital, BOLOGNA
- Prof. Bernardo Dalla Bernardina, Infantile Neuropsychiatry Division -
Policlinic of VERONA
- Prof. Edvige Veneselli, Infantile Neuropsychiatry Division - G. Gaslini Institute, GENOVA
- Dr. Tiziana Granata, Infantile Neuropsychiatry Division - Neurologic Institute C.Besta, MILANO
- Dr. Claudio Zucca, Neurophysiopathology Unit - E.Medea Scientific Institute,
LECCO
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- a newsletter published twice a year
- a website (with the help of AFHA webmaster Philippe Jourdain) http://www.aisea.org
- contacts with the doctors of the medical board and with other Italian
doctors who have AHC patients
- distribution of brochures, medical articles and information about AHC
- fundraising (40.000 Euro collected in the 2002)
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- Organization of a meeting of families at least once a year
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- At the beginning of 2001 AISEA sponsored a research about the
neuropsychologic features of AHC undertaken by the University of
Psychology of PADOVA
- A graduating student visited 17 (out of 18) families of AISEA all over
Italy and made tests and observations of the children, in order to
evaluate their intellective level, the functional autonomy and the
psychologic profile.
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- The results of the psychologic research have been published in
specialized magazines and presented at national and international
Congresses.
- The collaboration with the University of Psychology of Padova went on
during all 2002. Many families have been evaluated more deeply in order
to define a specific individual rehabilitative plan for each child.
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- Unfortunately, because of serious problems of organization inside the
University, at the beginning of 2003, the collaboration with the
psychologists of Padova has stopped.
- Other organizations (research and rehabilitation institutes) have
already contacted us in order to go on with the study of the
neuropsychologic features of AHC and provide the children with an
individual support.
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- Saturday and Sunday 6-7 October 2001, A.I.S.EA organized a meeting
between the AHC families and the members of the Medical Board.
- The meeting was held in a country house near Perugia, in the greenery
and peace of the hills of the Umbria region.
- The site was particularly appreciated by the children who were able to
relax, to know one another and talk freely of their disorder and
problems
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- The doctors defined a unique research project to start immediately after
the meeting, they also presented it to the families.
- The first phase of such project is a clinical study and the building of
a Data Base with the neurologic and neuropsychologic data of all the AHC
Italian cases.
- Such Data Base will be the basis for further activities: functional
studies, metabolic and genetic research.
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- In 2002, A.I.S.EA payed 13.000 Euros for a grant to a collaborator of Dr
Gobbi, Dr Melania Giannotta, in order to collect the data of the AHC
Italian cases and build the Data Base.
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- In May 28th 2003, A.I.S.EA organized in Foligno an
International AHC Working Session in order to create a collaboration
among the most involved doctors and researchers and define new common
research projects.
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- Dr Swoboda and Dr Schlesinger presented their genetic project and the
Clinical DataBase.
- The italian doctors and geneticists proposed new projects: functional
studies with MRI and Evoked Potentials and a genetic screening on a new
gene recently discovered in Italy for the Hemiplegic Migraine.
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- At the end of the Working Session all the participants agreed on the
validity of the presented projects and on some common activities:
- To unify the American and the Italian Databases
- To share all the clinical data and the blood samples and eventually to
build a unique international AHC DataBase accessible via Internet
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- The two following days, Saturday 29 and Sunday 30th March
2003, the meeting of the Italian families was held
- The Italian doctors presented the results of the previous day and the
future steps in the Italian research for AHC
- Dr Swoboda and Dr Schlesinger presented their genetic research and the
clinical Data Base.
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- From the left:
- Roberta, Stefania (19), Sofia (1), Samuele (4), Tiziano (4), Luisa,
Andrea (11)
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- To you all my best wishes and thank you for your support and friendship.
- Rosaria Vavassori,
- Alberto’s (10) mum, President of A.I.S.EA
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Notes
