AHCF Family Meeting Raleigh N.C., 22 24 July 2011 The Italian Association A.I.S.EA: Activity report (1) Social Activities A.I.S.EA Onlus Italian Association for Alternating Hemiplegia Via Sernovella, 37 23878 Verderio Superiore (LC) IT WebSite http://www.aisea.org
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 1999 The main site is in Verderio Superiore (LC), near Milan. At present it gathers 110 official members mainly parents and relatives of children affected by AHC In Italy there are 46 known AHC cases (mean age 19 years) 2
A.I.S.EA The Board of Directors The board of directors is composed by five parents: Rosaria Vavassori (Lecco), Alberto s (18) mother, President Laura Margherita (Rome), Germana s (24) mother, Vice President Vittorino Bocchi (Milan), Emanuele s (24) father, Director, Filippo Franchini (Varese), Lorenzo s (11) father, Director Michele Zangari (Genova), Alessio s (10) father, Director Nicolò Bona (Milan), Samuele s (12) grandfather, is our Secretary and Treasurer 3
The Scientific Committee of A.I.S.EA Prof. Maurizio Clementi, Department of Medical Genetics UniversityofPADOVA Dr. Giuseppe Gobbi, Child Neurology Unit - Hospital Maggiore, BOLOGNA Dr. Tiziana Granata, Child Neurology Division Scientific Institute C.Besta, MILANO Prof. Giovanni Neri, Institute of Clinical Genetics University Cattolica, ROMA Prof. Edvige Veneselli, Child Neurology Division Scientific Institute G. Gaslini, GENOVA Prof. Federico Vigevano, Neurology Department Child Hospital Bambino Gesù, ROMA Dr. Claudio Zucca, Neurophysiopathology Unit - Scientific Institute E. Medea, Bosisio Parini (LC) 4
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, ROME Doctor Renato Borgatti,(neuropsychology and rehabilitation) Department of Neurorehabilitation 1 Scientific Istitute E.Medea, Bosisio Parini (LC) 5
Activities of A.I.S.EA to pursue two main goals Development of the research of the causes of the disease and of an effective treatment Long term goal Both these goals are important for the families and are pursued in parallel A better quality of life: health and social assistance, autonomy, social integration Short-medium term goal 6
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 7
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 8
A.I.S.EA Ordinary Activities Meetings 2010-2011 I.B.AHC Video-Session for the validation of the diagnosis of the new AHC cases (Rome, 30 January 2010) National Family Meeting (Rome, 20 21 March 2010) Family Meeting Southern Area (Cosenza, 23 October 2010) Family Meeting Northern Area (Milan, 6 November 2010) Meeting of the Scientific Committee (Rome, 29 January 2011) National Family Meeting (Rome, 26 27 March 2011) 9
A.I.S.EA Ordinary Activities Meetings 2010-2011 I.B.AHC Video Session for the validation of the diagnosis Rome, 30 January 2010 Out of 5 suspected cases of AHC presented by their treating physicians, the diagnosis of only four of them were validated 10
A.I.S.EA Ordinary Activities Meetings 2010-2011 Family Meeting Southern Area Frascineto (CS), 23 October 2010 11
A.I.S.EA Ordinary Activities Meetings 2010-2011 Family Meeting Northern Area MILAN, 6 November 2010 12
A.I.S.EA Ordinary Activities Meetings 2010-2011 National Meeting Rome, 26 27 March 2011 13
Ordinary Activities 2010-2011 Fundraising 5xThousand (people donate the 5x1000 of their taxes to non-profit organizations) Favors for Weddings, baptisms and First Communions 14
Ordinary Activities 2010-2011 Fundraising by the families and the friends In all the regions of Italy 15
Ordinary Activities 2010-2011 Fundraising by the families and the friends 365 Bad Stories a noir anthology The proceeds of its sale are destined to A.I.S.EA www.365web.tk
Quality of Life Publication of the White Book for understanding and managing Alternating Hemiplegia (in Italian, in English and in Spanish by the association AESHA) Publication of the National Guidelines for the assistance of the persons affected by AHC and of their families 17
White Book for Alternating Hemiplegia A practical guide to understand and manage this rare disease Written by the members of the Scientific Committee in collaboration with the families of A.I.S.EA Adapted and translated by the Spanish association in collaboration with their doctors 18
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 by 1. Italian Ministry of Health 2. National Institute of Health 3. A.I.S.EA Onlus http://www.snlg-iss.it/en_news_gl_alternating_hemiplegia 19
Sponsorship A.I.S.EA 2010-2011 for the assistance and the autonomy 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, ) 20
A Service of Social Assistance 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 21
A.I.S.EA Social Activities 2011.. To be continued (research) A.I.S.EA Onlus Italian Association for Alternating Hemiplegia www.aisea.org www.ibahc.org 22