Supportive Hug at Planetario de la Ciudad de Buenos Aires

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For 3rd consecutive year, we performed a symbolic supportive hug for ALS. We invited people living with the disease, their families and those who have been affectively impacted, to achieve communion and personal contact, accompanying those who undergo the different stages of the disease. Undoubtedly, hugging each other, and sharing feelings and emotions generates empathy.  The event’s framework was the appropriate to promote the ALS Epidemiological Project that we organize as coordinating institution.

Preliminary results of the genetic study for people with ALS in Argentina.

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The study funded by the Asociacion ELA Argentina targets the frequency of the G4C2 hexanucleotide expansion on Gen C9ORF72 and clinical features of patients that approached the reference sites. The C9+ expansion was found only in familial cases, in 2% (N=1) of ALS, 33% (N=1) of FTD and 40% (N=2) of ALS+FTD. Therefore, the frequency of C9+ was 0% in sporadic and 25% in familial (2 ALS+FTD cases, 1 ALS son of 1 FTD, i.e. 3/12). Onset age was 32 years in ALS, 60 in FTD, 60 and 72 in ALS+FTD. Gender results showed male in the ALS case and female in all cases involving dementia. In all cases with ALS criteria, the onset was bulbar. Among family history of the disease we found: ALS, FTD, ALS+FTD, psychiatric disease and sudden death. Ethnic origin in the 3 families was mostly European (Italian and Spaniard).

National Rock Night for ALS in Mendoza

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Show by Los Tribunos with Raul Porchetto as a special guest. Organized by the Mendoza Chapter at Nave Universitaria of the Universidad Nacional de Cuyo on November 6th, 2015. From the total funds raised, AR$ 5.000.- were assigned to our work inclusion project "Eyes that Speak.” There was an attendance of 150 people.

"The Association’s transportation service is excellent"

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We drive people living with ALS. "Until now, nobody had taken care and transported me as the Association did," Felipe said thankfully. He is a 76-year old patient that we drove with his wheelchair from his home to Dr. Gisella Gargiulo Monachelli’s specialized medical office, located in Buenos Aires’ downtown.