In Brazil, the ice bucket challenge, initiated in the US, has raised people’s awareness about a serious disease for which there is still no simple treatment or cure: amyotrophic lateral sclerosis (ALS). The campaign, launched in a bid to collect funds, went viral after such figures as Bill Gates and Mark Zuckerberg accepted the challenge of spilling water and ice over their heads and making a donation.
The initiative reached Brazil through partnerships with local associations, like the Paulo Gontijo Institute (IPG), the Association for the Cure of ALS, and the Brazilian ALS Association (Abrela).
However, the support from Brazilian celebrities and its success on the internet have not resulted in very significant donations. According to IPG Director Silvia Tortorella, the institute has up to now received a mere US$ 8,900.
This figure can be increased by donations by credit card or bills printed from the internet. Nonetheless, the amount is not expected to reach anywhere close to the US$ 40 million raised in the US, where people are known to donate to social organizations more regularly.
Silvia praises the campaign for spreading knowledge about a very serious problem. While largely unknown, the ASL is a major neurodegenerative condition. A person suffering from ASL has its motor system considerably impaired and may be unable to walk, speak and even breath as an effect of paralysis.
The degenerative process takes place rather quickly. It is believed that 80 percent of motor neurons are lost by the time the first symptom is perceived. This is why the average ASL patient is estimated to live for three to five more years. Exceptions occur, as is the case with scientist Stephen Hawking, who has been afflicted with the disease for over 50 years.
According to the Brazilian Health Ministry, the incidence of ASL in Brazil fluctuates from 0.6 to 2.6 people for every 100 thousand inhabitants. The discovery of a cure can still not be estimated. IPG and Abrela Science Director Miguel-Neto said that countries like the US, the UK, Belgium and France have been conducting important research into the condition.
In Brazil, the Center for Research on Human Genome and Stem Cells, connected with the University of São Paulo, studies the disease through some lines of research.
One of them, pursued by Mitne-Neto, takes into account a possible association between the hereditary variety of ALS (10 percent of all cases) and the shortage of a certain protein. If this is confirmed, scholars may develop new kinds of treatment and make earlier detections possible.
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