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24 April 2017

2081It is often easy to dismiss viral charity campaigns as “slacktivism”, which lacks in real-world impact (we never did catch the warlord Joseph Kony, after all) but a breakthrough discovery bankrolled by 2014’s ALS ice bucket challenge may give the lie to that cynicism.

The ice bucket challenge was a phenomenon in the summer of 2014 in which people dunked a bucket of iced water over their heads in order to solicit donations before nominating others to do the same.

Scores of celebrities including Mark Zuckerberg, Anna Wintour, Tom Cruise, Charlie Sheen, Robert Downey Jr and hundreds more made videos, but the campaign was criticised by some.

Slate wrote that “for most of the people posting ice bucket videos of themselves on Facebook, Vine, and Instagram, the charity part remains a postscript”, while Time called it “problematic in almost every way”, going on to say that “most of its participants ... didn’t mention the disease at all. The chance to jump on the latest trend was an end in itself. In fact, the challenge’s structure seems almost inherently offensive to those touched by ALS.”

But the proof of the pudding was in the eating: the campaign raised more than $100m in a 30-day period and was able to fully fund a number of research projects.

One of these was Project MinE, a large data-driven initiative funded by the ALS Association through ice bucket challenge donations, as well as donations from the organisation’s Georgia and New York chapters. The project’s researchers announced on Monday that they had identified a new gene associated with the disease, which experts say could lead to new treatment possibilities.

Amyotrophic Lateral Sclerosis, also known ALS or Lou Gehrig’s Disease, is a neurological disorder in which the motor neurones that control muscle function slowly die. The disease can be either sporadic or inherited, and in either case, there is currently no cure.

“It’s very exciting because it shows everyone who contributed to the ice bucket challenge that their donation had an impact on the research,” said Brian Frederick, executive vice-president of communications and development at the ALS Association. “The work that Project MinE is doing is really important, and the discovery of this new gene will help us better understand ALS.”

The newly discovered gene, NEK1, is only associated with 3% of ALS cases, but it is present in both inherited and sporadic forms of the disease, which researchers say gives them a new target for the development of possible treatments.

Project MinE has been working to sequence the genomes of 15,000 people with the disease, and the discovery, which was described in a paper published on Monday in the journal Nature Genetics, involved more than 80 researchers in 11 countries.

The discovery was significant, Frederick said, “because it helps us understand what’s triggering this and can help us better find a treatment,” though he added that “it’s still very early in our understanding of this particular gene, and we still have ways to go with understanding ALS generally.”

By: NICKY WOOLF
PUBLISHED: 27 JULY 2016
THEGUARDIAN

 

10 April 2017

Parkinson’s Awareness Week runs this week (10-16 April) and focuses on the urgent need for funding to unlock the next step of research developments into the condition.

The We Won’t Wait campaign highlights the fact that levodopa, the main drug used in treating the condition, hasn’t changed in 50 years, with no current medication available to slow down or stop the condition’s spread.

The first in a series of campaign videos features Donna, the third generation of women in her family to have Parkinson’s, with both her mother and grandmother diagnosed before her.  Donna is committed to supporting research into the condition to find a cure, as she worries for her own daughter’s potential future diagnosis.

The Parkinson’s UK ‘#WeWontWait’ campaign aims to raise essential funds and awareness that will drive forward developments in Parkinson’s research and will hopefully help find more effective treatments that are desperately needed for the 127,000 people currently living with the condition.

Last week Parkinson’s UK unveiled its improvements to donor journeys on its website, designed to make it easier for donors to give.

By: HOWARD LAKE
PUBLISHED: 10 APRIL 2017
FUNDRAISING

 

17 MARCH 2017

62754eeb b971 4c99 8538 4e303c2fecdc 2060x1236There are several questions that have fascinated behavioural scientists for decades: why do people ignore information that is right in front of us? Why do we seem to care so little about our long-term futures? And why do we give money to charity? Behavioural science can help us to unpack the question further. 

Researchers have looked into why people donate, why they don’t do it as much as they would hope to and how to bridge this gap. The explanations for charitable giving fall into three broad categories, from the purely altruistic – I donate because I value the social good done by the charity. The “impurely” altruistic – I donate because I extract value from knowing I contribute to the social good for the charity. And the the not-at-all altruistic – I donate because I want to show off to potential mates how rich I am.

But are these motives strong enough to enable people to donate as much as they would want to? Most people support charities in one way or another, but often we struggle to make donations as often as we think we should. Although many people would like to leave a gift to charity in their will, they forget about it when the time comes. Our research shows (pdf) that if the will-writer just asks someone if they would like to donate, they are more likely to consider it and the rate of donation roughly doubles.

Hearts over heads

Many people are also aware that they should donate to the causes that have the highest impact, but facts and figures are less attractive than narratives. In a series of experiments, it was found that people are much more responsive to charitable pleas that feature a single, identifiable beneficiary, than they are to statistical information about the scale of the problem being faced. Further work also discoveredthat advertising which emphasises the proven effectiveness of the charity does not increase giving. Other evidence suggests that the effect of this information can actually be the opposite. In short, when it comes to charitable giving, we are often ruled by our hearts and not our heads.

Influenced by others

Another of the major takeaways from the research in this area is that giving is fundamentally a social act. One study shows that people give significantly more to their university if the person calling and asking for their donation is their former roommate. Researchers found that when JustGiving donors see that the donor before them has made a large donation, they make a larger donation themselves.

It’s not just out friends and families who can influence us. Donors to an international development charity were more likely to respond to a match–funding campaign if they knew that that the match came from the Bill and Melinda Gates foundation than if it came from an anonymous source. In our own research working with a large employer and Marie Curie, we have found that celebrity supporters increase donations to charity, and fast – but that this only appears to work for people who have donated to the charity before.

Giving is contagious

The good news is that charitable giving is contagious – seeing others give makes an individual more likely to give and gentle encouragement from a prominent person in your life can make also make a big difference to your donation decisions – more than quadrupling them in our recent study. Habit also plays a part – in three recent experiments those who volunteered before were more likely to donate their time than those who had not volunteered before.

In summary, behavioural science identifies a range of factors that influence our donations, and can help us to keep giving in the longer term. This is great news not just for charities, but also for donors. Researchhas revealed that spending money on others actually makes us happier than spending it on ourselves, and giving to others can actually make us healthier. So what are we waiting for?

By: MICHAEL SANDERS AND FRANCESCA TAMMA
PUBLISHED: 23 MARCH 2015
THEGUARDIAN
 

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