Editorial
The ice-bucket challenge—the social media viral sensation of the summer of 2014—has given an unprecedented boost to the coffers of charities involved in research into and the care of people with amyotrophic lateral sclerosis (ALS). However, as welcome as the influx of donations is, such windfalls can prove to be unsustainable. Without a concrete follow-on strategy, once the ice-bucket challenge cash has dried up, those invested in ALS will be back to contemplating the perennial dilemmas of how best to proceed with only limited resources. The ice-bucket challenge requires participants, when nominated by their peers, to be filmed while dousing themselves in iced water as a forfeit for not donating (or in most cases in addition to donating) to a charity of their choice, and then to post the footage online and declare their own nominations. While the ice-bucket challenge has been a vehicle to drive charitable donations since at least 2013, the first association with ALS is unclear; social folklore attributes it to when professional golfer Chris Kennedy did the challenge in June, 2014, and nominated his cousin, whose husband has ALS. The related posts on social media led to the participation of other sports people; politicians and celebrities jumped on the bandwagon, leading to a maelstrom of global social media activity and a surge in donations that caught ALS charities completely by surprise. The US ALS Association took nearly US$110 million between July 29 and Aug 29, 2014, compared with US$2·8 million in donations during the equivalent period in 2013. In addition to this much appreciated shot in the arm to funding, the challenge has also raised public awareness of this rare disorder to unprecedented levels, even if only to inform people that the disease exists. However, the spikes in donations and interest could prove to be ephemeral if the momentum generated by the challenge is allowed to peter out. Ways must now be investigated to capitalise on the potential donor base that has been built up through the challenge and keep these people interested in, and keen to learn more about, ALS. This will hopefully lead to the self-sustaining awareness and ongoing support that is commonplace for other, hitherto more high-profile, disorders. By keeping ALS in the forefront of public consciousness and by building on the awareness of the specific challenges faced in ALS, the momentum of the ice-bucket challenge will keep going. www.thelancet.com/neurology Vol 13 November 2014
The recipients of the ice-bucket money are now faced with the mammoth task of deciding how to apportion the donations. All parties will undoubtedly have their own shopping list of priorities; and, realistically, even if all the donations to the various ALS charities are pooled, this is unlikely to be sufficient to fund a cure for ALS. Therefore, sustainability is again a key consideration when it comes to allocating the funds generated from the challenge. Undoubtedly, the forging of large multinational collaborative groups comprising the best research teams working towards a common goal has many advantages in this respect; the ability to generate a high level of awareness and the increased lobbying power that comes with scale are both key drivers of sustainability. Although symptomatic and holistic interventions for ALS are available, progress in bringing disease-modifying treatments to market has been slow. After nearly three decades of unsuccessful trials, only one treatment, riluzole, has marketing approval, and this has only modest benefits on survival and function. In the wake of so many failed trials for ALS, it is also perhaps time to look towards different paths and to complement conventional trials with innovation in trial designs and avenues for investigation, and the application of novel approaches. Such analyses should also include critical reflection and thorough analysis of the reasons why previous investigations were unsuccessful. In this spirit, in this issue Mitsumoto and colleagues tease out some pertinent lessons that can be applied from previous failures, with the aim of moving forward. Furthermore, two Articles epitomise the openmindedness in study design that could be applied to future investigations: Al-Chalabi and colleagues use a multistep model inspired by those used in cancer research to investigate a cumulative or multi-hit model to explain the development of ALS in participants in European population registries; and Cudkowicz and colleagues use a novel combined phases 1–3 trial design to investigate the extent to which ceftriaxone might slow the course of ALS through decreasing synaptic glutamate excitotoxicity. The ice-bucket challenge is an excellent example of the power that can be wielded by viral social media campaigns, and we hope that the self-perpetuating nature of this phenomenon will continue to drive forward progress in ALS research, long after the first-wave of contributions has been spent. ■ The Lancet Neurology
Sverre Haugland/CULTURA/Science Photo Library
The bucket list for amyotrophic lateral sclerosis
For more on the ALS ice-bucket challenge see http://tinyurl. com/mrt6ge8 For more on the switch of focus to ALS see http://tinyurl.com/ mhq68sf For more on advances in treating ALS see Trends Neurosci 2014; 37: 433–42 For more on the lessons of previous trials see Review page 1127 For more on the multistep model see Articles page 1108 For more on ceftriaxone in ALS see Articles page 1083
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The ice-bucket challenge—the social media viral sensation of the summer of 2014—has given an unprecedented boost to the coffers of charities involved in research into and the care of people with amyotrophic lateral sclerosis (ALS). However, as welcome as the influx of donations is, such windfalls can prove to be unsustainable. Without a concrete follow-on strategy, once the ice-bucket challenge cash has dried up, those invested in ALS will be back to contemplating the perennial dilemmas of how best to proceed with only limited resources. The ice-bucket challenge requires participants, when nominated by their peers, to be filmed while dousing themselves in iced water as a forfeit for not donating (or in most cases in addition to donating) to a charity of their choice, and then to post the footage online and declare their own nominations. While the ice-bucket challenge has been a vehicle to drive charitable donations since at least 2013, the first association with ALS is unclear; social folklore attributes it to when professional golfer Chris Kennedy did the challenge in June, 2014, and nominated his cousin, whose husband has ALS. The related posts on social media led to the participation of other sports people; politicians and celebrities jumped on the bandwagon, leading to a maelstrom of global social media activity and a surge in donations that caught ALS charities completely by surprise. The US ALS Association took nearly US$110 million between July 29 and Aug 29, 2014, compared with US$2·8 million in donations during the equivalent period in 2013. In addition to this much appreciated shot in the arm to funding, the challenge has also raised public awareness of this rare disorder to unprecedented levels, even if only to inform people that the disease exists. However, the spikes in donations and interest could prove to be ephemeral if the momentum generated by the challenge is allowed to peter out. Ways must now be investigated to capitalise on the potential donor base that has been built up through the challenge and keep these people interested in, and keen to learn more about, ALS. This will hopefully lead to the self-sustaining awareness and ongoing support that is commonplace for other, hitherto more high-profile, disorders. By keeping ALS in the forefront of public consciousness and by building on the awareness of the specific challenges faced in ALS, the momentum of the ice-bucket challenge will keep going. www.thelancet.com/neurology Vol 13 November 2014
The recipients of the ice-bucket money are now faced with the mammoth task of deciding how to apportion the donations. All parties will undoubtedly have their own shopping list of priorities; and, realistically, even if all the donations to the various ALS charities are pooled, this is unlikely to be sufficient to fund a cure for ALS. Therefore, sustainability is again a key consideration when it comes to allocating the funds generated from the challenge. Undoubtedly, the forging of large multinational collaborative groups comprising the best research teams working towards a common goal has many advantages in this respect; the ability to generate a high level of awareness and the increased lobbying power that comes with scale are both key drivers of sustainability. Although symptomatic and holistic interventions for ALS are available, progress in bringing disease-modifying treatments to market has been slow. After nearly three decades of unsuccessful trials, only one treatment, riluzole, has marketing approval, and this has only modest benefits on survival and function. In the wake of so many failed trials for ALS, it is also perhaps time to look towards different paths and to complement conventional trials with innovation in trial designs and avenues for investigation, and the application of novel approaches. Such analyses should also include critical reflection and thorough analysis of the reasons why previous investigations were unsuccessful. In this spirit, in this issue Mitsumoto and colleagues tease out some pertinent lessons that can be applied from previous failures, with the aim of moving forward. Furthermore, two Articles epitomise the openmindedness in study design that could be applied to future investigations: Al-Chalabi and colleagues use a multistep model inspired by those used in cancer research to investigate a cumulative or multi-hit model to explain the development of ALS in participants in European population registries; and Cudkowicz and colleagues use a novel combined phases 1–3 trial design to investigate the extent to which ceftriaxone might slow the course of ALS through decreasing synaptic glutamate excitotoxicity. The ice-bucket challenge is an excellent example of the power that can be wielded by viral social media campaigns, and we hope that the self-perpetuating nature of this phenomenon will continue to drive forward progress in ALS research, long after the first-wave of contributions has been spent. ■ The Lancet Neurology
Sverre Haugland/CULTURA/Science Photo Library
The bucket list for amyotrophic lateral sclerosis
For more on the ALS ice-bucket challenge see http://tinyurl. com/mrt6ge8 For more on the switch of focus to ALS see http://tinyurl.com/ mhq68sf For more on advances in treating ALS see Trends Neurosci 2014; 37: 433–42 For more on the lessons of previous trials see Review page 1127 For more on the multistep model see Articles page 1108 For more on ceftriaxone in ALS see Articles page 1083
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