• Spain's news in English

'Ice bucket videos can distract from ALS cause'

Alex Dunham · 27 Aug 2014, 14:25

Published: 27 Aug 2014 14:25 GMT+02:00

Facebook Twitter Google+ reddit

As in the rest of the world, many Spanish ice bucket challengers posting their videos on YouTube seem to have forgotten what the viral activity is really all about.

"At first it seemed like people didn't know how to donate," Guevara told The Local.

"It was as if all the videos of people pouring ice cold water on themselves were not really informing people about amyotrophic lateral sclerosis (ALS).

"That’s changed now, largely thanks to radio. Without the somewhat distracting footage, we've been given the chance to tell listeners in Spain what ALS sufferers go through and why we need their help."

Guevara is by no means against the viral IBC campaign, calling it "fun" and arguing that at the very least most people have now heard of the neurodegenerative disease.

"We've received €25,000 ($32,000) in donations in the last week so the campaign is finally helping," Guevara added.

"The figures are nowhere near those of the American ALS Association but whatever research they can fund with the millions (€10 million–$13.3 million in July) they’re receiving will definitely help our ALS patients too."

READ ALSO: Italian scientists map brain to diagnose ALS

ADELA, as Spain’s ALS association is called, uses all the donations it gets on providing treatment to patients rather than looking for a cure.

"There are 2,800 ALS sufferers in Spain, all of whom require physiotherapists to help them fight their loss of bodily movement, speech therapists when they start having trouble talking and general carers to help them with simple, daily tasks."

The non-profit group also cover the cost of any equipment needed to make ALS sufferers’ lives easier, from cranes to communication computers they operate with their mouths.

ALS, or ELA in Spanish, sees patients suffer from increasing muscle atrophy. They also have difficulty with speaking and breathing as their muscles and spinal chords lose nourishment and weaken.

“We have to pay for their treatment because Spain’s health ministry only gives subsidies to (serious) grade three disabilities, or people who are completely dependent on others,” Guevara explains.

Story continues below…

"Those who are grade two but struggle with the simplest of tasks get nothing. They’re often left waiting for months to be evaluated or to be given financial cover, meaning their condition rapidly worsens and they’re left bedridden."  

Guevara, president of Spain’s ALS Association, is still positive about what’s resulted from an awareness campaign she labels as “unique”.

"ALS has played a large part in my life as family members have died from it and I've been part of the association since 1995. We've never ever been given so much attention as now."

If you want to find out more about ALS and how to donate or volunteer, click here.

For more news from Spain, join us on Facebook and Twitter.

Alex Dunham (alex.dunham@thelocal.com)

Facebook Twitter Google+ reddit

Your comments about this article

Today's headlines
Most wanted: Fugitive rapist arrested in Tenerife
Mohammed Jahangir Alam was arrested n Tenerife. Photo: Crimestoppers.

Mohammed Jahangir Alam, one of Britain's most wanted fugitives, who fled the country in 2008 after allegedly raping a woman, was found working in Tenerife.

Spain's Rajoy says king has tasked him with forming govt
Photo: AFP

Spain's king on Tuesday tasked Mariano Rajoy with forming a government, taking the acting conservative prime minister a step closer to power again after a 10-month political deadlock.

Two imams arrested in Ibiza resort over 'Isis support'
The men were arrested in the resort of Sant Antoni de Portmany. Photo: Jose A / Flickr

Two Moroccan imams at a mosque on the Spanish resort island of Ibiza were arrested Tuesday on suspicion of backing the Islamic State group and inciting jihad.

Balearic Islands choose to keep summertime forever
The islands will have longer evenings during winter. Photo: AFP

The Balearic Islands want to keep summertime when the rest of Spain turns the clocks back on Sunday.

  Brazilian had 'uncontrollable desire to kill': Spain police
Francois Patrick Nogueira Gouveia has been charged with murdering his uncle, his wife and their two children. Photo: Guardia Civil.

A Brazilian teenager accused of dismembering his uncle and aunt and killing their two young sons in a grisly crime that shocked Spain had an "uncontrollable desire to kill", police said on Monday.

Man rescued from bin after climbing in to find old clothes
Photo: Policía Local Murcia

Police were called after passersby reported hearing a man calling for help from within a rubbish bin in the Vistabella neighbourhood of Murcia, southern Spain.

Spain faces crucial week as conservatives re-take power
Mariano Rajoy hopes to form a government this week. Photo: AFP

Spain entered a crucial week as acting conservative PM Mariano Rajoy prepared to re-take power, ending ten rollercoaster months without government marked by hope and disillusion.

Eight very creepy Halloween costumes ideas from Spain
Photo: Pan's Labyrinth

Forget flamenco dancers and bullfighters, The Local counts down the freakiest alternative costume ideas to dress up in this Halloween.

Man attacked by racist thug in UK street for talking Spanish

Tomas Gil, 27, from Valencia in eastern Spain was talking to his girlfriend in their native language after a night out in the British seaside town of Poole when he was set upon by a racist thug.

Malaga: Police probe bizarre 'sex death' of homeless Brit
The man was found near Malaga airport. Photo: Dennis Howlett / Flickr

A British homeless man was found dead tied to a bench near Malaga airport with his trousers down and his genitals in a can of tuna.

Analysis & Opinion
Out of the dark: Five years on from Eta ceasefire
Sponsored Article
Last chance to vote absentee in the US elections
Spanish 'La Mafia' restaurants banned after Italian complaint
Spain's top court overturns bullfighting ban in Catalonia
Hunt launched for ten most wanted Brit fugitives hiding out in Spain
Napflix: Spaniards launch very boring TV channel for siestas
Madrid parish church faces fine over 'too noisy' bells
Celebrate expat life at Madrid’s THRIVE convention
Fury after kids told to bring their own loo roll to school
Disney announces plans for Don Quixote action movie
Activist tells 8-yr-old matador wannabe with cancer 'just die'
King to make last minute push to avoid third vote in Spain
Amazing photos of Catalonia's 'human tower' contest
What's on in Spain: October 2016
'No way, Jose! You'll never get your hands on our Rock'
Recipe: How to make a classic Spanish tortilla de patatas
Chorizo in paella? Go back to cooking school Jamie Oliver
Spain in eye of a perfect storm after 10 months without govt
Thousands share clips of life for 'Spain in a Day' film
Ten incredible Spain locations for Game of Thrones season 7
Analysis & Opinion
Why moving to Spain could be the best decision of your life
Seven reasons why autumn is the very best season in Spain
Spanish study finds four types of personality. Which are you?
New search underway for civil war grave of poet Lorca
jobs available