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

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