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facial-scapular-peroneal myopathy: a woman's call to share news and initiatives with other patients

Hi, I am suffering from facial-scapular-peroneal myopathy. I'd like to be informed on the evolution of my condition and possibly make contact with other people with the same disease, to participate in initiatives aimed at raising awareness and give, however useful,
a personal contribution to research. Today I have 55 years, and only 10 years ago my "apparent weakness" was diagnosed. Greetings Marialuisa


Contact:
associazioni@telethon.it

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unilateral polymicrogyria: an appeal from a mama

Hello, I'm a mom of a 16 year old boy suffering from unilateral polymicrogyria;
I'd really like to be contacted by families with children with unilateral polymicrogyria in order to compare. Thanks for now, expect answers.

Contact:
francesca_santini@fastwebnet.it

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Amyotrophic Lateral Sclerosis - Respiratory Problems : from physiopathology to clinical ethics

On 16 December the meeting will be held in Pavia titled Amyotrophic Lateral Sclerosis - Problems breathing: from pathophysiology, the clinical ethics. Sclerosis Lateral sclerosis (ALS) is a neurodegenerative disease
involving primarily motor neurons of the anterior horn of the spinal cord, brain stem and the fifth layer of the cerebral cortex. This disease has estimated annual incidence in the world of 1-3 new cases per 100,000 inhabitants and a prevalence of 6-7 cases out of 100,000.
Despite the availability of new technologies to assist people with ALS, many families, patients, home care do not receive sufficient information about the diagnostic, treatment and management of respiratory complications.
becomes necessary to deploy all the resources to give the patient the ability to access all the tools possible
can assure him and his family an acceptable quality of life in all stages of the disease.

The conference will take place at the Fondazione Salvatore Maugeri - IRCCS Maugeri Foundation

Congress Centre Hall "Salvatore Maugeri"
Via Salvatore Maugeri, 6

For info: segreteria@aisla.it

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FRAGILE X SYNDROME - INFORMATION SHARING PLAN

Friday, November 26 in Milan will hold a meeting dedicated to Fragile X syndrome, little known cause of cognitive delay and understated, which affects an individual male in 4000. There will be specialists and parents.
The meeting will take place in Piazza Santa Eufemia 2, starting from 9.30.

For info: Michele De Nuccio

denucciomichele@yahoo.it
349-5400002

Alessandra Airoldi
info@xfragile.net
02 47717104 3472701084

- Fragile X Syndrome
Italian Association Onlus
cp14359, 20146 Milano
c / c Banca Monte dei Paschi di Siena
IBAN IT 93 H010 3050 2410 0006 3141 996
c / c postale 91805523

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UNIVERSITY 'Milano Bicocca RING14 AND SIGN AN AGREEMENT FOR A NEW SCIENTIFIC RESEARCH

Another step was taken to help parents and doctors of children with abnormalities of chromosome 14. A few days ago, the International Association RING14 Scientific has signed an important agreement with the Department of Psychology of Bicocca in Milan, for the activation of a research prevention, diagnosis and assessment of difficulties in the development of children with the syndrome RING14. The goal of the collaboration is the study of language in children with abnormalities of chromosome 14

For info: Dr. Albert Sabatini

Press RING14 Onlus
Web site: www.ring14.org
E-mail: sabatini . alberto@ring14.it
Mobile: +39.328.1204251
Office: +39.0522.421037

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New members of CIAM in Campobasso

Grazie all'iniziativa di Maria Fostinelli of Stationery Sistem2000 , CIAM has been unable to Campobassso a watercolor course of nine hours during the third week of November.

Welcome new members of CIAM and we hope to see you during summer courses to be held in Casacalenda. In the meantime, you may have a way to practice with the different techniques used during the course .....

(a photo of the group of Campobasso)