ahcf family meeting - ibahc.org filelaura margherita (rome), germana’s (24) mother, vice president...
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A.I.S.EA OnlusItalian Association for Alternating Hemiplegia
Via Sernovella, 37 – 23878 Verderio Superiore (LC) ITWebSite http://www.aisea.org
AHCF Family MeetingRaleigh N.C., 22 – 24 July 2011
The Italian Association A.I.S.EA:Activity report (1)Social Activities
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A.I.S.EA The Italian Association for AHC
A.I.S.EA – the Italian Association for the Alternating Hemiplegia Syndrome is a non-profit organization founded in April 1999The main site is in Verderio Superiore (LC), nearMilan.At present it gathers 110 official membersmainly parents and relatives of children affectedby AHCIn Italy there are 46 known AHC cases (meanage 19 years)
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A.I.S.EA – The Board of Directors
The board of directors is composed by five parents:Rosaria Vavassori (Lecco), Alberto’s (18) mother, PresidentLaura Margherita (Rome), Germana’s (24) mother, Vice PresidentVittorino Bocchi (Milan), Emanuele’s (24) father, Director, Filippo Franchini (Varese), Lorenzo’s (11) father, DirectorMichele Zangari (Genova), Alessio’s (10) father, Director
Nicolò Bona (Milan), Samuele’s (12) grandfather, isour Secretary and Treasurer
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The Scientific Committee of A.I.S.EA
Prof. Maurizio Clementi, Department of Medical Genetics– University of PADOVADr. Giuseppe Gobbi, Child Neurology Unit - Hospital Maggiore, BOLOGNADr. Tiziana Granata, Child Neurology Division – ScientificInstitute C.Besta, MILANOProf. Giovanni Neri, Institute of Clinical Genetics –University Cattolica, ROMAProf. Edvige Veneselli, Child Neurology Division –Scientific Institute G. Gaslini, GENOVAProf. Federico Vigevano, Neurology Department – ChildHospital “Bambino Gesù”, ROMA Dr. Claudio Zucca, Neurophysiopathology Unit -Scientific Institute E. Medea, Bosisio Parini (LC)
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Advisors of A.I.S.EA
Doctor Nardo Nardocci (movement disorders), Child Neurology Division –Scientific Institute C.Besta, MILAN Professor Fiorella Gurrieri (dismorphology), Istitute of Clinical Genetics – University Cattolica, ROMEDoctor Renato Borgatti,(neuropsychologyand rehabilitation) Department of Neurorehabilitation 1 – Scientific Istitute“E.Medea”, Bosisio Parini (LC)
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Activities of A.I.S.EAto pursue two main goals
Development of the research of the causes of the disease and of an effective treatment
Long term goal
A better quality of life: health and social assistance, autonomy, social integration
Short-medium term goal
Both these goals are important for the families and are
pursued in parallel
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Ordinary Activities - Information
Distribution of brochures, medical articles and information about AHC
Participation to Scientific and Medical Congress and sponsorship of informative sessions about AHC
Organization of Family meetings and medical/scientific workshops
Fundraising
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Ordinary Activities - Information
«I like to run and play»Advertising spot to have broadcasted on the
radio and TV channels, local and national
http://www.youtube.com/watch?v=CUklHrwHxhM
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A.I.S.EA – Ordinary ActivitiesMeetings 2010 - 2011
I.B.AHC Video-Session for the validation of the diagnosis of the new AHC cases (Rome, 30 January2010)
National Family Meeting (Rome, 20 – 21 March 2010)
Family Meeting Southern Area (Cosenza, 23 October2010)
Family Meeting Northern Area (Milan, 6 November2010)
Meeting of the Scientific Committee (Rome, 29 January2011)
National Family Meeting (Rome, 26 – 27 March 2011)
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A.I.S.EA – Ordinary ActivitiesMeetings 2010 - 2011
I.B.AHC Video Session for the validation of the diagnosisRome, 30 January 2010
Out of 5 suspected cases of AHC presented by their treating physicians, the diagnosisof only four of them were validated
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A.I.S.EA – Ordinary ActivitiesMeetings 2010 - 2011
Family Meeting Southern AreaFrascineto (CS), 23 October 2010
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A.I.S.EA – Ordinary ActivitiesMeetings 2010 - 2011
Family Meeting Northern AreaMILAN, 6 November 2010
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A.I.S.EA – Ordinary ActivitiesMeetings 2010 - 2011
National Meeting Rome, 26 – 27 March 2011
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Ordinary Activities2010 - 2011
Fundraising5xThousand (people donate the 5x1000 of their taxes to non-profit organizations) Favors for Weddings, baptisms and First Communions
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Ordinary Activities 2010 - 2011
Fundraising by the families and the friends
In all the regions of Italy
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Ordinary Activities 2010 - 2011
Fundraising by the families and the friends“365 Bad Stories”a noir anthologyThe proceeds of its sale are destined to
A.I.S.EAwww.365web.tk
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Quality of Life
Publication of the White Book forunderstanding and managingAlternating Hemiplegia (in Italian, in English and in Spanish by the association AESHA)
Publication of the National Guidelines forthe assistance of the persons affectedby AHC and of their families
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White Book for Alternating Hemiplegia
A practical guide tounderstand and manage this rare
disease
Written by the members of the
ScientificCommittee in
collaboration withthe families of
A.I.S.EA Adapted and translated by the Spanish association in collaborationwith their doctors
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Guidelines for Alternating Hemiplegia
Guidelines for the assistance to the persons affected by
Alternating Hemiplegia and their families
(diagnosis, treatment, management of the attacks, rehabilitation, health and social services,
school attendance, adult life)
Published by1. Italian Ministry of Health
2. National Institute of Health3. A.I.S.EA Onlus
http://www.snlg-iss.it/en_news_gl_alternating_hemiplegia
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• Individual projects presented by the families
• Contributions for the personal assistance (sanitary, educational, rehabilitation, psychotherapeutic) and for material aids (mobility and vision, computers)
• 11+2 funded projects in 2010 (participation to summer camps, travelling abroad, sports courses, acting classes, …)
Sponsorship A.I.S.EA 2010 - 2011for the assistance and the autonomy
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• Surveys to obtain a better description of the real life problems and needs
• Info point and counseling for the families
• Support to the definition of an individual educative and life project and to its realization through the involvement of the local health and social services (a sort of case-manager to support the multidisciplinary approach to the care for this complex and rare disease)
• By a professional social worker
A Service of Social Assistance
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….. To be continued (research)
A.I.S.EA Onlus
Italian Association for Alternating Hemiplegiawww.aisea.orgwww.ibahc.org
A.I.S.EA Social Activities 2011