When a viral challenge raised a huge sum to fight a little-understood disease, the charity that got the money was overwhelmed. As the first breakdown of spending emerges, David Cox asks what happened next — and what it means for patients

After the ice bucket challenge: they raised $115m for the fight against ALS. So how did they spend it?

At the ALS Association (ALSA) headquarters in Washington DC, Carrie Munk vividly remembers the phone call that first alerted her to the ice bucket challenge. “It was the first week of August and I was at an off-site meeting,” says Munk, ALSA’s chief communications officer. “I picked up the phone and it was the executive of our centre in Massachusetts. He said, ‘You all need to be aware that something big is happening.’ So we quickly checked our fundraising figures, and out of nowhere there was about a $50,000 increase on where we’d been the previous year.”

As the impact of what was taking place slowly dawned, puzzlement turned to excitement – and then panic. That week 200 people gathered in Boston’s Copley Square to take the challenge simultaneously. A few days later, Los Angeles followed suit. The donations continued to flood in.

The small initiative that began a month earlier in a Massachusetts living room was rapidly spiralling into a global, social media monster. The friends and family of Pete Frates, a former captain of the Boston College baseball team who was diagnosed with ALS in March 2012, are widely credited with starting it. Frates’ mother, Nancy, recalls scouring the internet in the first few weeks, commenting, Facebook-liking and sharing every challenge video she could find.

Within weeks, Hollywood stars, athletes and even global leaders were joining in the fight against ALS. (The abbreviation for amyotrophic lateral sclerosis, known as motor neurone disease in the UK, has now become much more familiar on this side of the Atlantic.) Barack Obama donated to the cause. YouTube became a battleground for the funniest clips. On 20 August, ALSA received more than $11.5m overnight.

Facebook Twitter Pinterest Hundreds take ice bucket challenge in Boston’s Copley Square

With staff working around the clock to deal with the surge of interest, Munk’s previous experience of working for the American Red Cross kicked in. “The closest thing I could compare it to is a crisis response to a natural disaster,” she says. “Our staff put their normal tasks to one side, and for three weeks all we did was answer emails and phone calls and open mail from people with questions about ALS and the challenge. While we didn’t start the campaign, people were turning to us for information, and we felt a responsibility to help provide that, and to keep the momentum of this incredible effort going.”

By mid-September, when the momentum finally began to subside, the challenge had raised more than $115m for ALSA, and millions more around the world, including £7m for the Motor Neurone Disease (MND) Association in the UK. And while that offered an extraordinary opportunity, it was not without its pitfalls. The story of the attempt to make the most of it is one of good intentions, unintended consequences and hope against the odds.

For those with the disease, hope took hold right away. “I can’t remember exactly when I heard about the challenge – it went viral so quickly,” says Rebecca Kidd, a 54-year-old from Atlanta who was diagnosed with ALS in January 2012. “I first started seeing it trend on Facebook, and then folks in our neighbourhood started getting on board. My 11-year-old son took the challenge on my behalf, and my friends and family all joined in. For me, some of the most moving challenges were the ones done by my son’s friends supporting him. I want to believe the challenge was more than a good thing, a game-changer. I hope we’ll look back on it as a milestone in the battle for a cure, the turning point in both raising awareness and the funds necessary to finally find answers.”

Meanwhile, ALSA’s executives faced the challenge of handling a windfall amounting to almost five times the charity’s typical annual revenue, amid an increasing clamour for information on how they were planning to spend it.

This week, a clearer indication of the results emerged: the breakdown of how ALSA has spent the money. Anyone who feared that the organisation would be funnelling all its funds into further attempts to go viral would have been relieved: around 70% of the money is being spent on research, and 20% on patient and community service. The remainder is split between fundraising, publicity and administration costs. The ice bucket challenge has not driven the organisation to take leave of its senses.

And that money was urgently needed. One of the initial decisions made by ALSA was to repair the gaping hole in care funding left by the 2008 financial crisis. ALSA runs 48 certified clinics across the US, which provide therapies ranging from respiratory to psychological, help with equipment such as specialised wheelchairs, and palliative care for those in the final stages of the disease.

On average, ALS affects six people in every 100,000. Life expectancy typically ranges from three to five years. Kidd has a slower progression of the disease, but like all patients, she knows the inevitable is coming. “My own onset began in my right toes, and has been progressing,” she says. “For now, my speech is still very good, as is my swallowing. But over the past three years, I’ve watched this disease rob people of their ability to move, talk, swallow and ultimately breathe. There were 14 people who got the diagnosis on the same day as me. 80% of us are probably gone.”

The only medication currently available to patients is Rilutek, a medication discovered in the 1940s that increases survival by an extra two to three months. “It’s easy to despair,” says Ted Harada, a 41-year-old father of three, who has ALS. “One day a doctor tells you: ‘You have ALS. There’s nothing you could have done to avoid getting it. And I’m very sorry, but I don’t have a cure or a treatment.’ And there’s nothing you can do. As a cancer patient, you can try chemotherapy or surgery. With ALS, you want to fight it, but you’re told there’s no fight to be had.”

Facebook Twitter Pinterest Lady Gaga takes the ice bucket challenge

Both Kidd and Harada hugely value the support network provided by their local clinics. But after 2008, many patients were deprived of this resource as care services were decimated. “All non-profits took a really big hit,” says ALSA’s CEO, Barbara Newhouse. “The budgets for all our care centres were halved. The grants available to help patient families were cut and programmes were scrapped. Thanks to the ice bucket challenge, we’ve been able to restore our centres to their full budget, reinstate things like respiratory care programs, refresh the equipment we provide for patients, employ more social workers and open new centres in rural areas.”

In this respect, the ice bucket challenge has already undoubtedly made a vast difference. But ALSA’s executives know that perhaps the ultimate determination of its success will depend on the development of a successful treatment.

“Everybody working within the ALS community now feels a strong sense of urgency,” Newhouse says. “The public is way more aware of ALS than ever before. We’ve tripled the amount of research we’re funding, and I’m hopeful that in maybe five to seven years from now, we will be in the process of developing a treatment that can turn this from a terminal to a chronic illness.”

Is that really feasible? Since the ice bucket challenge, ALSA has received almost 10 times the previous number of grant applications. Around $80m will go towards a broad spectrum of research projects – a scattergun approach that they hope will maximise the chances of finding a solution.

But as with all neurodegenerative disorders, the major obstacle to developing a cure is our current lack of understanding of the disease variation between patients. ALS is now believed to be an umbrella term for many different forms of the disorder, just as there are various types of flu. Without fully knowing why the damage to the motor neurons, which stretch out from the spinal cord to the muscles, occurs over a much shorter timescale in some patients than others, trying to find drug targets has proved fruitless. There have been 18 failed clinical and preclinical trials in the last decade, most recently with a drug called dexpramipexole, which cost US company Biogen $100m when it returned negative results at the final stage of testing.

A large chunk of the ice bucket challenge-funded research budgets are going into Project Mine, a global gene-hunting collaboration that many believe could soon yield new therapeutic strategies.

“ALS is a complex disorder with many genetic strands intertwined with environmental factors,” says Brian Dickie, research director at the MND Association. “This will help us nail down the genetic basis of the disease, and not just the bad genes – we’re interested in the good genes too. Why has Stephen Hawking been able to live for 50 years while 90% of patients die within five years? Perhaps there’s something in his genetic makeup that hasn’t stopped the disease from manifesting, but has altered the trajectory of the disease. If we can identify some of these protective genes, we can perhaps develop a drug that amplifies their effect in all patients.”

There is a degree of public scepticism towards big data genetics initiatives, which have so far yielded little clinical benefit in two decades of research. But with technological advances cutting the costs of sequencing a genome from $30m to $1,800 in the past decade, many are hopeful this could soon change.



“Gene studies did not reveal much of use until about six years ago, but they are now rapidly advancing our knowledge,” says Ammar Al-Chalabi, professor of neurology at King’s College London. “When I started in ALS research in 1994, the only known cause accounted for just 2% of cases. Now, we can explain about 20% of cases. Through studies of individual lifestyles and the way our DNA changes during our lives, it should become easier to design effective treatments.”

While 90% of ALS cases occur sporadically, 10% are directly hereditary. A number of these cases are related to a particular mutation in a gene called C9orf72, and Lucie Bruijn, director of research at ALSA, is hoping that an ice bucket challenge-funded project can yield a straightforward treatment within a short timeframe, using a new technology called antisense therapy.

“I have a good hunch that we will get this into the initial phases of clinical trials within the next two to three years,” she says.

However, Bruijn cautions that it will be longer before such a therapy becomes widely available to patients, due to the vast amount of money it takes to bring a concept through to completion.

“It costs $1bn-$2bn to develop any treatment, and that reality puts the ice bucket challenge money in perspective,” she says. “It’s been a tremendous contribution to our research program, but we have to leverage many more funds to get anything through the system.”

For many patients currently living with ALS, these therapies are likely to come too late. Some are pinning their hopes on stem-cell therapy for a faster solution, with a series of clinical trials in Israel, South Korea and the US achieving some promising results during the last 12 months.

Facebook Twitter Pinterest Ted Harada takes the ice bucket challenge

After being diagnosed with ALS five years ago, Harada signed up for a trial run by Eva Feldman, a senior ALS researcher at the University of Michigan. Feldman had developed a novel technology that involves injecting specially designed stem cells directly into a patient’s spinal cord. While it is impossible to try to regrow the chains of nerve cells that stretch up to a metre from the spine out to the muscles in the fingers, these stem cells clean up the diseased spinal cord and nurse the surrounding nerve cells back to health.

“I was fortunate to get on, because in the first phase there were only 15 patients accepted,” Harada says. “I didn’t know it would help me, but I felt I had to try. Who wants to die without hope?”

In total, Harada received two separate treatments, and within weeks he noticed an improvement in his condition. “The surgery basically turned the clock back to when I first started noticing the symptoms. And while I still have ALS and I will start to deteriorate again, it has slowed down the progression a lot. It’s around 10-12 months until I have a new deterioration that can be measured.”

Harada was one of the fortunate patients. Not all experienced such benefits, and Feldman is currently waiting to see whether she will receive funding from ALSA to conduct larger trials, using specialised imaging scans to try to pinpoint why certain patients have a more positive physiological response to stem cells than others.

Even for Harada, it has not cured him of his condition, and until the therapy is approved by the FDA, he has no prospect of receiving further treatment. “I wish it was a cure, but it’s not,” Feldman says. “It does have the potential to seriously delay the progression of the disease, though. When you diagnose someone with ALS, one of the first things they say is, ‘How long do I have to live?’ If someday I can say, ‘More than 10 years,’ it gives a much greater sense of hope.”

However, gaining the funds and public acceptance to continue the work remains a problem. “Stem cells remain controversial on our side of the pond,” Feldman says. “These are not embryonic, but there are still many individuals who feel very strongly that stem cell therapy is not ethical. It remains an emotional hotpot in the US.”

While stem cell therapy is still under investigation and remains at best an interim treatment for ALS, able to mitigate symptoms for a short period of time, others believe that in future it may prove highly effective as part of a combination treatment in conjunction with gene therapy.

“ALS is more complicated than an acute disease like a stroke, where you insert the stem cells and replant the forest,” Dickie says. “With ALS, you can plant the new trees, but the forest fire is still burning all around you. The stem cells are these little cleansing factories, keeping the surviving motor neurons healthy, and with gene therapy, it may be possible to beef them up and make it easier for them to fight off the disease.”

Many patients would like to see more money invested into stem cell research in the short term, in order to try to accelerate the chances of a treatment being clinically approved, even if the benefits are only short-term. “From our perspective, things are moving very slowly,” Kidd says. “As a current patient who hears that the goal is to find an answer in the next decade, I just don’t feel that is aggressive enough. We need to set the bar higher. The ice bucket challenge gave me hope that this might be possible, but on the other hand, I have fully accepted there may not be an answer in time for me. But that’s still a tough dynamic to live with day to day.”

Perhaps the way the ice bucket challenge has most made a difference is with awareness of the disorder, something both ALSA and the MND Association are hoping to capitalise on in order to ensure that people continue to donate to the fight against the disease. Another ice bucket challenge is planned for this summer, and this time, neither Kidd nor Harada will have to explain to anyone what ALS is.

But while that can be comforting, it is also a stark reminder of their fate. “Before last summer, when I told people I had ALS I was usually met with a blank stare,” Kidd says. “I then had to explain this disease, how tortuous and devastating the journey to the end is. Now when I reveal my fate, I get an immediate reaction. They know what I’m talking about, and unfortunately, instead of a blank stare, I see the shock and pity on their faces.”