Monday, November 29, 2010

How To Make God Turn You Into A Werewolf

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

Iron Horse Bicycle Outlaw

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

Friday, November 26, 2010

Soapy Taste In Mouth, Pregnant?

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

Thursday, November 25, 2010

Bejewled 2 Bluescreen

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

Gilligan's Island Invitation

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

Wednesday, November 24, 2010

Hot Wheels Hwr Roadster Gas Powered Go Kart

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)

Thursday, October 28, 2010

What Sort Of Motherboard Is Mv42v1.3

infantile systemic hyalinosis: a father's appeal

are
Antonio Boemio father of little Rita, 3 years old girl suffering from a rare genetic disease, the "infantile systemic hyalinosis" . Only 20 cases certified to the world and when there is only my daughter in Italy. About Me story began three years ago. Nobody knew that this disease, no research laboratory that study, no association who would take charge and give attention to these few children, like all the others have the right to a dignified life.
I felt very lonely but I have not given up. Today, thanks to the suggestion that I founded the Association Telethon Onlus ISI, first in the world dealing with this disease in order to know the same.
I would like to make the life of us parents that without suffering because we have not had the joy of seeing our children run and play, but violent cycles of physiotherapy in the hope that can bring benefits such as being able to eat by themselves, scratching o giocare con qualche bambola. Aiutatemi a trovare altri angeli affetti da questa malattia oltretutto difficilissima da diagnosticare.
Grazie di cuore.
Antonio
Sito: www.associazioneisi.it
Email: isi.associazione@libero.it

Tuesday, October 26, 2010

The Base For A Spaghettibridge

A training course for caregivers of knowledge and awareness

AICH-Roma Onlus e Fondazione Roma Terzo Settore invitano al convegno per la presentazione del Manuale “Hurry Up And Wait” – “Sbrigati e Aspetta” di James Pollard. L'incontro si terrà il 12 novembre 2010 dalle ore 9-17 a Roma presso il Villino Medioevale – Technotown in via Lazzaro Spallanzani 1/A .

Il percorso formativo promuove una nuova cultura dell’assistenza Consider that the patient
as a "person" in a global sense, with its wealth of life experiences, his
personality, tastes, desires and aspirations ... A culture of care that recognizes the limits of the sick
but also the potential need to keep intact as
relations of affection and intimacy and therefore help him to establish with a carer
alliance in the battle that every day struggles to make sense of his life
that the disease has made so "different."

With the introduction and distribution of the manual "Hurry Up And Wait" - "Hurry up and wait
" the Rome-AICH Onlus intende fornire, a chi si fa quotidianamente carico
dell’assistenza ad un paziente, con patologia cronico/degenerativa come la MH, non
generiche informazioni ma strumenti concreti di intervento capaci di influire positivamente
sulla qualità di vita del malato e della famiglia.
Registrazione su http://www.aichroma.com/ o comunicando la partecipazione allo 06.44242033

Cudia скачять

The Flight of Pegasus

Il Concorso artistico - letterario "Il Volo di Pègaso, raccontare le malattie rare" è giunto alla sua terza edizione.

Il tema di quest'anno è ”Le voci del silenzio”. È di silenzio, infatti, che a un certo punto experiences the pain. Very often, waiting for diagnosis and therapy when life becomes a limbo, only silence can be.
It is here that comes the challenge: transforming silence into words, figures or images that can trace a path to the exit from the pain and isolation.

addition to fiction, poetry, photography, painting, drawing and sculpture, this year there will be a section devoted to commercials (TV or radio).
We send you attached the Regulation of Competition.

The deadline for sending works is October 30, 2010.
To learn more, please visit the homepage of the National Center for Rare Diseases http://www.iss.it/cnmr/

What Do You Wear Under 50's Girdles

theoretical and practical training course: The method Pyramid and 9 skills Communication

27 – 29 Ottobre 2010, Aula “Schembri” , Viale delle Scienze Palermo

Training PECS
Si tratta di un workshop di tre giorni approfondito e dedicato all’attuazione dell’Approccio Pyramid Educational; è ideato per le équipes multidisciplinari. Gli argomenti trattati includono le attività funzionali, i sistemi di rinforzo, le competenze comunicative, e i comportamenti inadeguati in base al contesto e le loro possibili alternative. La generalizzazione, la creazione di lezioni efficaci, le strategie d’insegnamento specifiche, la riduzione e la correzione degli errori, l’analisi and data collection, are also studied in detail as well as new communication skills are crucial. Among the activities included are reports, demonstrations, video analysis, writing in group activities, collaborative planning, and role playing. This training is ideal for people who work with students who have speech or functional systems of communication in place. This training is also convenient for the teams that build specialized educational programs in education, or for existing teams looking for training opportunities and full implementation.

For more information visit the website PECS www.pecs.com
Il programma del corso è disponibile sul sito www.autismoperche.it

Segreteria organizzativa:
A.G.S.A.S. – Onlus e-mail: info@autismoperche.it
telefax 091/226331 e 091/7035400
cell. 334 6416614 sig.ra Santina Calsabianca

Skin Colored Bumps On Body

week international epidermolysis bullosa

Anche quest'anno DEBRA Italia Onlus prenderà parte alla Campagna Internazionale sull'EB, “Walk a Mile in My Shoes” assieme a DEBRA International.

L’Epidermolisi Bollosa - internazionalmente conosciuta come “Sindrome dei Bambini Farfalla” – appartiene a una famiglia di malattie genetiche rare, caratterizzate da pelle estremamente fragile – da qui l’associazione alla delicatezza delle ali di una farfalla - così fragile che ogni minimo contatto può provocare lo sviluppo di ricorrenti e dolorose bolle e lesioni. In alcune forme la malattia declina in cicatrici deturpanti, dando luogo a deformità muscolo-scheletriche e coinvolgendo anche alcuni organi interni.

Questa iniziativa, che avrà luogo nella settimana dal 25 al 31 Ottobre 2010 in tutto il mondo, ha come scopo quello di sensibilizzare quante più persone possibili e rendere nota questa rara malattia genetica.
L’obiettivo principale della Settimana Internazionale EB, attraverso la campagna “Walk a Mile in My Shoes”, è quello di stimolare la consapevolezza tra le Istituzioni e la società globale, circa l’impatto intrinseco che l’Epidermolisi Bollosa ha sulla vita dei malati e sulle loro famiglie.
Questo breve video mostra quello che un Bambino Farfalla, deve sopportare quotidianamente durante le medicazioni. Ecco il link: http://www.youtube.com/watch?v=tMvocDNeaME

Maggiori informazioni sul sito:
http://www.debraitaliaonlus.org/
segreteria@debraitaliaonlus.org
mobile: 331.6085084

Saturday, October 23, 2010

Pink Colored Cervical Mucus

Lesson 6: "pears" with the on-wet technique bagato

What you need:
Paper 100 percent cotton with a weight of 300 grams per square meter.
Colors: yellow trasparente (oppure giallo aureolina, o siena naturale), blu cobalto (oppure oltramare francese) e cremisi d'alizarina.
Pennelli: rotondo medio e quadrato medio.

Come procedere:
Prendere qualche pera dal vostro frigo e fare una composizione. Disegnare diverse bozze e transferire sulla carta acquerello il vostro disegno preferito. Per questo esercizio ho aggiunto una pera alla volta, senza farmi prima un disegno sulla carta.
Mettere l'acqua su una pera alla volta e mettere il colore aureolina e terra di siena su qualche parte di una pera solamente e fare spostare il colore aiutandovi dall'acqua messo sulla carta. Lasciare spazi in bianco senza colore. Ecco la prima pera fatta con la sua ombra. Fare nello Similarly the second pear. See second photo on the water on the second pear.


Make a second pear in the same way, starting with the water. Do all the pears in the same way.

Once all the pears made so wet on wet, you do the background using the same methodology. For the background, I have a chart using the alizarin and French ultramarine with a little 'cobalt blue. Attention, leave a space without putting water all around the pears. The result:


I decided to work again watercolor to give more contrast between the pears. When everything is really dry you can work again. Here is a watercolor on which I rebuilt some pears putting more blue and more blue for the background. So have fun and make it a lot: as I said already: 10% talent and 90% of work!



Monday, October 18, 2010

Does Impitigo Reoccur

The words to say


Friday, October 15, 2010

Why Do People Like Ball Gags

"Who research, treatment"


La Fondazione Telethon dedica una giornata di meetings open to the public to present the new achievements and future prospects for the treatment of 7 rare genetic diseases .

"Those who research, treatment" is the title of the event takes place on Monday 18 October the Palace of the Bells - Corso Magenta 61, Milan.

The day will include two events open to the public:

  • to 16.00 " International Covenants and usable therapies: new targets Telethon." Speakers Alberto Fontana (UILDM National President and member of the board of Telethon), Luigi Naldini (director of ' Telethon Institute of Milan), Andrea Ballabio (director of ' Telethon Institute of Naples) and Davide Gabellini (research funded by Telethon)
  • to 18.00 " Towards the fourth sector: the encounter between the state, companies and non-profit originates a new collaborative model. " The round table involved Luca di Montezemolo (President of Telethon), Ferruccio Fazio (Health Minister), Sergio Dompe (President of Farmindustria) Francesca Pasini (CEO Telethon), Camillo Ricordi (director of the Diabetes Research Institute in Miami ).

Friday, September 24, 2010

Rhymes For Halloween Invitation

A national conference on MR

will be held Oct. 1 in Vicenza, in the Conference Hall - Fiera di Vicenza, the conference "Towards a National Plan on Rare Diseases, the protagonists meet.

will be attended, among others, geneticist Prof. Bruno Dalla Piccola, Renza Galluppi Barbon, president of UNIAMO and Paola Facchin, responsible for the coordination of the Veneto Regional Register of Rare Diseases

info: http://malattierare.marionegri.it/images/downloads/convegni2010/2010_10_01_programma_afadoc . pdf

Play Simpson Hit And Run Online

A workshop on rare diseases

will be held Oct. 1 in Ischia, at the 3rd International Fair of Wellness, the ASPECTS WORKSHOP MOLECULAR AND CLINICAL DELLE MALATTIE RARE
Saranno presenti anche due ricercatori Telethon, Giancarlo Parenti e Generoso Andria della II Università di Napoli

ISCHIA - 1 OTTOBRE 2010
HOTEL TERME GALIDON
Via provinciale Forio-Panza, 166 (Citara)
80075 FORIO D’ISCHIA
info: www.vivereinbenessere.com

Sunday, September 19, 2010

What Does Mottled Skin Indicate

Watercolour, the fifth lesson: landscape, wet on wet and fog

During the summer courses offered by CIAM in Casacalenda, the majority of participants experienced the two main techniques of watercolor: Banat-on-wet and glazing . To paint this landscape in three colors using the two techniques. If you want, before you put water on paper, you can draw a picture to mark the hills and river. For the more advanced, do not do the drawing.

What you need for this lesson:
100-percent cotton paper and 300 grams per m.quadrato
-color: transparent yellow, red cadnium, and cobalt blue (you can also do with ultramarine)
- brushes: round and square (the latter is not essential)

First stage: the sky (wet on wet) Ben
wet the paper with water. This time I did not put the tape because I used the blochetto paper. You can work so directly, without the need to set the paper on the tablet. To help with this exercise, place the pad at an angle of 20-25 degrees to help the color to fall.
After very wet, place the transparent yellow on top of the paper, up to half, leaving a little 'white space on the right. Dilution of color: the media.

Wasting no time, add the red to yellow cadnium without covering it entirely.
Next, add a few patches cobalt blue.
If the paper is drying, take the steamer and add a little case of rain water.

Allow to dry before moving on to the second stage, ie the glazing to paint the earth.

Second phase: the earth (wet-dry)
When the paper is dried well (there must be moisture) and then take a cobalt blue glaze imitating a landscape of hills, like those of Molise and leave blank a lake and a river that runs diagonally across the paper in imitation of the river Biferno.

Fare una seconda velatura per dare più rilievo alle colline più vicino e sul resto della carta.


Fare una terza velatura sempre creando altre colline e finire la velatura fino alla base della carta. Notate il piccolo paese sulla collina alla base della carta. Fate qualche ritocco usando sempre la velatura.


Ecco il nostro acquerello completato. Divertitevi usando diversi colori (solamente tre colori). Per i soci del CIAM, mandateci i vostri esercizi per avere commenti alla mail:  ilciam21@gmail.com




Loreta Giannetti
watercolor artist
CIAM President

Thursday, September 16, 2010

3 Year Old Costume Party Invitation Wording

Stage Telethon

JOB TITLE: Stage Storie di Malattia – Progetto Maratona Televisiva
AREA DI LAVORO: Comunicazione Istituzionale


1. RESPONSABILITA’
• Attività di segreteria a supporto del progetto: organizzazione dei viaggi dei malati per la maratona tv, archiviazione dati anagrafici e video
• Gestione dei contatti con i sick
• Support the preparation of interviews with sick people in view of the TV marathon

2. REQUIREMENTS OF ROLE
• Experience in organizing secretary
activities • Experience in writing articles
• Excellent knowledge of the main tools (Word, Excel, Power Point, Outlook E-Mail
)

3. SKILLS
• Effective communication and care in relationships
• Good listening skills and writing
• Problem Solving

4. OTHER INFORMATION
• Location: Via Carlo Spinola 16 - Rome
• Life Stage: September-December 2010
• Hours: 8 hours every day
• Reimbursement of expenses: 250 € mensilli
• Availability to travel

Send your resume in the mail stating "stage of illness stories" to: cv@telethon.it

Sunday, September 12, 2010

Cervical Cancer Schematic Digram

Award Winner "Elsa de la Luz" artistic season 2010: Wendy Messina

The exhibition of watercolors by members of CIAM during the course was set up in the space provided free of Angelo Polisena in Market Square 28 and 29 August 2010.
72 watercolors were subjected to the critical gaze of the people present at Casacalenda gathered numerous (more than 250 people) to enjoy and put the vote sull'acquerello preferred. The number 22 watercolor Wendy Messina Cleveland Ohio, USA has been chosen dalla gente del paese. Wendy era venuta a Casacalenda per passare le vacanze e fare acquerello. La tecnica l'ha molto colpita ed è stato per lei una bella introduzione all'acquerello! La sera della premiazione Wendy era già ritornata negli Stati-Uniti. Il sindaco di Casacalenda, Marco Gagliardi ha subito telefonato alla vincitrice per communicarLe la notizia. Sulla foto vediamo il sindaco mentre sta parlando al cellulare alla vincitrice e Elsa Corsi   gli presenta la targa del Premio "Elsa de la Luz" che dovrà poi consegnare alla pittrice dell'Ohio.
During the evening of the awards ceremony, a dozen awards were offered to members by drawing lots. The CIAM would like to thank in particular our two supporters, who have given us this award: it is the lady
Santina Perrotta of stationery Casacalenda " Your Library" and the lady Irene Giannetti Montreal .
In the photo, between the different water colors you see the number 22, the winning number, ie watercolor done by Wendy.


few photos of the participation and watercolors on display during degi i due giorni di esposizione .


Grazie a tutti coloro che hanno partecipato alla stagione 2010 del CAIM e alla prossima stagione sperando rivedervi tutti e accogliere nuovi soci.

Loreta Giannetti
Presidente
CIAM

Monday, September 6, 2010

Yellow Vacccination Card Blank

A conference for polycystic kidney

Saturday, September 11, 2010, at the Policlinico of Milan, the event will take place aimed at general practitioners and nephrologists entitled "The polycystic kidney disease and its manifestations." The course is free update for general practitioners and nephrologists provides a round table aimed at patients (CME credits awarded: 3.5) and is financed entirely by AIRP, Italian Association of polycystic kidney non-profit organization.

"polycystic kidney disease and its manifestations." Saturday, September 11, 2010 - Hours 8:30 to 18:00. Room A - Scientific Centre - 2nd floor, Policlinico di Milano, Via F. Sforza 35, Milan.

Brownies Vest Patch Placement

DAY OF CONSTITUTIONAL LAW FOR

Association "G. Dossetti: Values" is organizing a conference entitled "ART. 32: HEALTH ... And rare diseases? "BUILD A SINGLE BREATH."

The meeting will be held Thursday, September 16, 2010 from 08.00 to 18.00 to the CHAMBER OF DEPUTIES Palazzo Marini - Conference Room Via del Pozzetto, 158 - Roma (Piazza San Silvestro)

Info: www.dossetti.it

Howlong Does It Take For A Hematoma To Dissolve

now open Registration for the first conference AriSLA

The next September 29th will be held at Convention Center Cariplo Foundation (Via Romagnosi, 8), in Milan on 1 AriSLA Conference - New research perspectives. For a future without SLA!
"The event - explain the promoters - is the first meeting institutional and scientific AriSLA (for ALS Research Agency) will propose every year at the national and international community of researchers dealing with this disease, health professionals and of patients and their families, thanks to which will have updates on the steps that the research tasks concerning the SLA. To this end, there will be major national and international experts on the subject. "
Participation is free, by registering online by filling www.eventiarisla.org card on the site. Registration will be open from 2 August to 15 September.

this press release AISLA ONLUS
tel. 02 43986673 - 0321 499727

Swollen Red Elbow Warm

A workshop for hereditary multiple tumors

From September 16 to 18 in Gubbio at the Park Hotel ai Cappuccini is held on the twelfth international workshop on multiple endocrine neoplasia (MEN). At the meeting the association will participate Aimen 1 and 2 non-profit organization.

For info: www.men2010.com

Friday, August 20, 2010

Silverado Xd Rockstar

Exhibition of watercolors Casacalenda 28 and August 29, 2010

Anche quest’anno ha luogo l’appuntamento estivo per mostrare i lavori dei nostri artisti.
Nel locale della Piazza Mercato Casacalenda will be exposed to the paintings of watercolors by members.
can come in the morning of Saturday, August 28th to Sunday the 29th to admire and vote for you favorite watercolor, which will be selected for the award. The award Elsa de la Luz "will be delivered, in fact, on Sunday evening at 19.00, again in Local Market Square, the artist who has realized the work that receives the most votes.
you there!