ALS research spend surges thanks to Ice Bucket Challenge

The ALS Association has now decided exactly how it will spend the $100m-plus in donations received during its summer’s Ice Bucket Challenge.

The Association – which represents sufferers of motor neuron disease (MND; known as amyotrophic lateral sclerosis in the US) – says it has been able to triple its support for research programmes and boost funding for specialist treatment centres thanks to the viral fund-raising phenomenon.

Last month, the organisation announced $21.7m in funding – swelled to $34.2m with matched donations – for six research programmes looking for therapies for ALS. Four of them would not have gone ahead without the support of the 3m donors who pledged money during the 30-day Challenge, it said.

The Challenge saw people dump a bucket of ice onto their heads, post the video on Facebook and nominate three others to do the same within 24 hours, or make a $100 donation to the charity.

“Thanks to the Ice Bucket Challenge, we are able to continue to improve the most comprehensive pipeline for ALS treatments in the world,” said the charity’s chief executive Barbara Newhouse, who added there was now “tremendous momentum in the search for a cure.”

The bulk of the $21.7m research fund will advance the four new research projects. The ALS Accelerated Therapeutics(ACT) group – an industry-academic partnership providing support for phase II trials – will receive $10m, while the New York Genome Centre gets $2.5m to drive a ‘big data’ project seeking out the causes of ALS.

A pot of $5m goes to the Neuro Collaborative – a consortium of three labs in California focused on drug discovery, while $1m has been earmarked for Project MinE, which is in the process of sequencing the genomes of 15,000 ALS patients.

New lines of research are desperately needed, as the only drug approved for treating ALS – Sanofi’s Rilutek (riluzone) – has limited efficacy.

Meanwhile, one other project that will get underway because of the cash injection is the creation of an drug development guidance document, which will aim to “incentivise drug development, reduce obstacles and provide new opportunities to accelerate research and bring new treatments from the bench to the bedside.”

In addition to the research funding, the windfall will also be used to boost support for the Association’s Certified Treatment Centres of Excellence (CTCE) network, which provides multidisciplinary care to patients struggling with the disease.

Bill Thoet, chairman of the board of trustees of the ALS Association, said it is now important to “leverage our good fortune to work together toward our common goal of defeating this horrific disease.”

“Together, we now have the unique opportunity to fundamentally change the nature of this fight,” he added.

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