WELCOME

 “VIVERE LA SPERANZA” (“LIVING THE HOPE”) FRIENDS OF EMANUELE CICIO ASSOCIATION

 

WHO IS EMANUELE CICIO

Emanuele was born in Montefalco on July 24, 1974.

Like all young people he was exuberant and like all young people he was always active with the wish to do, to discover, to explore, to live.

He was a kind child and, though very shy,  was very aware of his place  in his city amid his fellow-citizens, his parents, his family, his country and his friends. He defended all that because this was his identity.

He trusted in good feelings and friendship was one of the most important values for him.

He showed an inner ‘greatness’ which went beyond his age; that’s why most of his friends were older than him.

 

Then, one day,  disease pounced on this young man. Yes, indeed, a serious disease  arrives like a crash; it has  a mortal effect when the diagnosis is a final and hopeless one. And that’s what happened to  Emanuele when he was fifteen; a rare tumour named MEN (Multiple Endocrine Neoplasia).

 

WHAT IS  THE ASSOCIATION “VIVERE LA SPERANZA” (LIVING THE HOPE) FRIENDS OF EMANUELE  CICIO

 

It is an association of volunteers which aims to raise funds for study and research in the field of rare neoplastic diseases with particular attention to MEN (Multiple Endocrine Neoplasia) and Neuroendocrine Tumours (NET). Though it has been set up in a small town like Montefalco (Perugia) the Association gives financial support to  high level scientific projects primarily involving Perugia University but also other national and international research centres.

 

WHAT MULTIPLE ENDOCRINE NEOPLASIAS (MEN) ARE

 

 MEN1 is a hereditary disease affecting different endocrine glands. It is also called Multiple Endocrine Adenomatosis or Wermer syndrome (from the  name of the man who first described it). It affects both sexes equally without showing special geographical, racial, or ethnic distribution.

Endocrine glands are characterized by their ability to release hormones into the blood flow. Hormones are chemical substances that exert many functions; they flow in the blood and regulate various organs’ activity. In MEN1 specific endocrine glands, such as the parathyroid, tend to be hyperactive (Hyperplasia and/or adenomas). Very often more than one single endocrine gland may be affected. Furthermore, malignant tumours may arise from neuroendocrine cells (neurondocrine tumours or carcinoid and/or neuroendocrine carcinomas or NET - see the following paragraph). Clinical presentation may, however, vary greatly in different patients.

 

In MEN1 the main glands involved are parathyroids, pituitary and pancreas. Moreover,  neuroendocrine tumours may  form in the abdomen and thorax.

 

 Multiple Endocrine Neoplasia type 2 (MEN2) is a hereditary disease which causes the formation of tumours in some endocrine glands such as medullary thyroid carcinoma (a malignant tumour), adrenals (pheocromocytoma) and parathyroids (hyperplasia).  Now, with the availability of genetic testing some surgical prophylactic strategies are possible. In particular, the thyroid may be surgically removed in affected individuals before the tumours develop.

 

WHAT NEUROENDOCRINE  TUMOURS (NET) ARE

 

Neuroendocrine tumours are a heterogeneous group of tumours  originating from neuroendocrine cells. As nuroendocrine cells are ubiquitous,  neuroendocrine tumours may arise in various organs. The most frequent sites are the gastro-entero-pancreatic district and the thorax (lung and thymus)  with different degrees of biological aggressiveness that range from a relatively slow growth behaviour to very aggressive tumours. These tumours are relatively rare but their prevalence  is still underestimated due to the fact that they are frequently  not recognized by un skilled  physicians. NETs can be sporadic or they can be associated with a Multiple Endocrine Neoplasia. The peculiar features of these tumours require a multidisciplinary approach. To better respond to this need a Multidisciplinary Regional Group for the Diagnosis and Treatment of Neuroendocrine Tumours has been created in the Oncological Referral Centre (CRO) also thanks to the continuous support of the Association “Living the Hope” friends of Emanuale Cicio.

 

HOW  THE  ASSOCIATION “VIVERE LA SPERANZA” WAS FOUNDED

 

The Association was  founded  by  Emanuele’s mother and friends and by all those who believe in this social project.

 

“I shared with my son Emanuele and my husband Lucio the most painful experience of a rare tumour – MEN – of which both of them were afflicted. We were looking   within ourselves for the strength  to fight and  to believe that medical research could find new therapies which are still lacking. It is today my firm intent to make my experience visible and use the funds raised by the Association for  making  at least a  small effort to support research so that we can increasingly speak of  a cure”.

 

  WHAT  ARE THE AIMS OF THE ASSOCIATION

 

-         To support national and international research projects finalized to the therapy of rare tumours,  in particular Multiple Endocrine Neoplasias (MEN) and Neuroendocrine Tumours. The results should be published  in  international peer-reviewed scientific journals. Furthermore, to attract young researchers in the field by promoting  awards and funds for competition of degree thesis prizes, PhD, bourses and fellowships on the topic.

 

-         To support affected patients and therefore the clinical activities dedicated to MEN1 and NET patients . In particular we support the clinical activities of Neuroendocrine Oncology of the Dept. of Internal Medicine and Endocrine Sciences of the University of Perugia dedicated to  MEN and NET clinical management and the activities of the Multidisciplinary Regional Group for the diagnosis and therapy of Neuroendocrine Tumours Referral Oncological Centre (CRO) of the Region of Umbria. The Association also offers phone numbers, an internet site and a mailbox to give assistance to affected people’s families in Italy and worldwide.  All services are completely free.

-         To stimulate  local and  national government  to consider and better resolve patient problems

-         To promote meetings and debates dedicated to patients and their families, to organize workshops and lectures dedicated to experts, to support high level courses and training for dedicated specialists in a multidisciplinary setting and information training for unspecialized physicians and nurses in order to improve their ability to recognize and properly manage the disease.

-         To diffuse knowledge regarding care, early diagnosis and clinical management of this disease. Such aims are achieved through: articles in international papers, national and international books and a website www.viverelasperanza.org (more than  25,000 visits since its opening).

Making people aware that living the hope is possible if the hope is supported by solidarity and love.

 

EVERYBODY CAN COOPERATE IN VARIOUS WAYS:

 

-         By  having the participation of the Association  in events  to publicize its aims and collect contributions to be devolved in support  of its objectives.

-          Contributions can be  made to the following bank accounts:

o       Banca Popolare di Spoleto - IBAN IT98 Z057 0438 5400 0000 0001 769

o       Cassa di Risparmio di Foligno -  IBAN IT14 W061 6538 5400 0000 0850 108

-         By taking part in every event organized by the Association or by setting up all possible scientific, cultural or   recreational  events supporting the Association’s aim.

-         By buying greeting cards and/or sweet-boxes  designed by the Association, for weddings or baptisms or other similar events.

 

HOW TO JOIN THE ASSOCIATION

 

It is possible to become a member of the Association on request with an annual contribution of 12 Euro. Members are entitled to receive a membership card, participate in meetings in order to be informed of the Association’s activities and help with ideas and projects.

For more detailed information one can visit the website or contact us directly.

Each individual patient correctly identified and cured justifies all our work.

 

HOW TO FIND US

“Vivere la speranza” friends of Emanuele Cicio – Via Luigi Panciani 11 - 06036 Montefalco (PG) Tel. e Fax 0742.379389

Cell. 347.5976811

Press office

cinziacesana@libero.it

328.6845667

 

Web site www.viverelasperanza.org

e.mail info@viverelasperanza.org

e.mail Adele Santini adeleviveresperanza@libero.it

 

 

Bank Accounts

Banca Popolare di Spoleto IBAN IT98 Z057 0438 5400 0000 0001 769

Cassa di Risparmio di Foligno IBAN IT14 W061 6538 5400 0000 0850 108

 

Scientific Committee

Prof. Fausto Santeusanio

Prof.ssa Gabriella Angeletti

Dott. Luciano Scionti

Dott.ssa Elisabetta Torlone

Dott. Piero Ferolla

Dott. Efisio Puxeddu

 

Supported by Montefalco Town Council