Presentation on theme: "ASSOCIAZIONE ITALIANA GLICOGENOSI THIS IS OUR ASSOCIATION LOGO: TWO CHILDREN HOLDIG A BALLON IN THEIR HANDS REPRESENTING THEIR ILLNESS. A BALLON THAT WILL."— Presentation transcript:
ASSOCIAZIONE ITALIANA GLICOGENOSI THIS IS OUR ASSOCIATION LOGO: TWO CHILDREN HOLDIG A BALLON IN THEIR HANDS REPRESENTING THEIR ILLNESS. A BALLON THAT WILL FLY HIGH ONCE ALL THE GLYCOGENOSIS HAVE A BETTER FUTURE.
WHY HAS IT STARTED? IN THE FAR 1996 A GROUP OF FAMILIES JOINED TOGETHER STARTED THIS ASSOCIATION IN ORDER TO DEAL WITH GLYCOGENOSIS AT A NATIONAL LEVEL; THE REASON WE STARTED THE ASSOCIATION WAS THE SENSE OF ISOLATION AND ANGUSH LINKED TO THE RARITY OF THIS ILLNESS. MOREOVER, TO OUR IMPOSSIBILITY TO ASSURE THE FUTURE OF OUR SONS AND DAUGHTERS.
MAIN GOALS 1.TO TAKE A CENSUS OF PATIENTS SUFFERING FROM THIS ILLNESS; 2.TO PROVIDE BOTH PRACTICAL AND PSYCHOLOGICAL HELP TO FAMILIES, CHILDREN, TEENAGERS AND EVERYONE INVOLVED WITH THIS ILLNESS; 3.TO MAKE THE PUBLIC OPINION AND INSTITUTIONS AWARE OF OUR EXISTENCE; 4.TO PROMOTE SCIENTIFIC RESEARCH.
WHICH WAYS 1.BY HELPING FAMILIES FACING AND SOLVING PROBLEMS REGARDING THIS ILLNESS: we made a video showing how to put the stomach pump in. Prof. Gatti wrote a guide for patients and families. Moreover a personal document called carta d'emergenza illustrates how a patient can manage critical situations; 2.BY PROVIDING FAMILIES A SERVICE OF GLOBAL CONSULTANCY: amongst our affiliates we can count a lawyer, a psychologist and a pediatrician and therefore, we are able to provide help in many ways; 3.BY BUYING MEDICAL INSTRUMENTS: such as glycemia gauge.
CONTINUES… 4. By Organizing meetings regarding glycogenosis all around Italy in the presence of families and scientific researchers; 5. By getting in touch with Italian and foreign research institutes in order to promote basic and clinical research: Ospedale Gaslini di Genova, Ospedale S.Matteo di Pavia, LIstituto di Patologia Generale dellUniversità di Siena, Policlinico Università di Milano and Telethon; 6. By organizing campaigns to inform and awaken public opinion by means of mass media: in the occasion of the release of the film with Harrison Ford we organized at Anteo cinema in Milano a press conference named "Extraordinary Measures: a discussion about rare myopathies". In the past we realized a spot broadcast by the Italian network Mediaset. Moreover we are on megazines, daily newspaper and network.
By delivering scholarships in order to promote the visibility of our association; By financing research and genic therapy projects; By trying to improve our presence on the web with a forum that allows the contact with young people. CONTINUES...
WHAT WILL WE DO NEXT? We would like to talk with you all about research projects because we strongly believe that everyons contribution could help to broaden our knowledge.
CONTINUES … Nowadays our Association counts about 216 patients and about 300 benefactors/supporters. TYPEPATIENTS 1A37 1B29 254 342 513 Other41
A BEAUTIFUL TALE Zeljko is a boy from Herzegovina suffering from glycogenosis 1A. Thanks to us and the aid of the International Red Cross, he came to Italy for an hospitalization. He arrived here in poor health:didnt have the strength to talk and to stand up. Thanks to our economical aid he was sent to San Gerardo Hospital in Monza doctors had took care of him. His health conditions got better day by day and Zeljko went back to his country with everything he needed to handle his disease for what concerns dietotherapy and pharmacology. A year later he came back to Italy for a check up and when we met him we could not believe what we saw: he came towards us smiling. This scene moved us deeply.
A BEAUTIFUL TALE Zeljko before the treatment Zeljko after the treatment
THE PRESIDENT: DOTT.FABRIZIO SEIDITA AND VICE-PRESIDENT: SIG.ra ANGELA TRITTO MAZZOTTI THANKS FOR THE ATTENTION wishing to continue on our way together AIG-Associazione Italiana Glicogenosi Associazione di Volontariato ONLUS di Diritto Via Roma, 2/G 20090 Assago (MI) Tel.: 02 4570 3334 Fax: 02 700 405 465 E-mail: firstname.lastname@example.org@iol.it Sito WEB: www.aig-aig.itwww.aig-aig.it