Ice Bucket Challenge Dramatically Affected Fight Against ALS, Independent Study Reports

Ice Bucket Challenge Dramatically Affected Fight Against ALS, Independent Study Reports

In the summer of 2014, the ALS Ice Bucket Challenge took social media by storm. Aimed primarily at raising awareness of the disease, the effort resulted in marked increases in spending on amyotrophic lateral sclerosis (ALS) research, an independent study shows.

According to the report by RTI International, a nonprofit research institute that helps entities objectively analyze programs and their impact, some $115 million in donations to the ALS Association allowed it to increase annual global research spending by 187%.

Since the challenge, there have also been upticks in collaborations, scientific advancements, and federal research funding, as well as expansions in care, according to a press release from the ALS Association, the world’s largest private funder of ALS studies.

Created by three men living with ALS, the challenge encouraged nominated participants to make a video of themselves having a bucket of ice water poured on their heads, after which they nominated others to complete the challenge. The informal rule was that nominees had 24 hours to follow suit or else they had to donate to charity. More than $220 million was donated to ALS charities worldwide.

“Five years after the Ice Bucket Challenge soaked the world, the pace of discovery has increased tremendously, bringing ALS researchers closer than they have ever been to real breakthroughs in diagnosing, treating, and eventually curing this disease,” said Calaneet Balas, the ALS Association’s president and CEO.

To understand the impact of the challenge, RTI evaluated the organization’s grant and National Institutes of Health (NIH) records, data from challenge-funded scientific projects, and surveys of ALS investigators globally.

Funds generated from the challenge had a direct effect on the search for ALS treatments and cures, according to the ALS Association, including the discovery of five new disease-related genes. Funding also helped pay for new clinical trials, and resulted in a 50% expansion in the association’s clinical network.

Hemali Phatnani, director of the Center for Genomics of Neurodegenerative Disease at the New York Genome Center, called the Ice Bucket Challenge transformative in the field of ALS genomics.

”We built one of the largest resources of ALS whole genome-sequencing data,” Phatnani said. “This resource has been shared with partners all over the world. It has accelerated the pace of ALS gene discovery, and has led to the largest ALS sequencing study in the United States.”

Between 2014 and 2018, the ALS Association pledged nearly $90 million in global research funding, including $81.2 million across 275 research grants in the United States and another $8.5 million abroad. During the same time period, collaborations among the association’s global network of scientists rose from 71 to 471. Such awards and partnerships helped foster increased knowledge of the disease, RTI reported.

“Researchers funded by the Association collectively increased their scientific output by 20 percent, measured by the annual count of published journal articles authored by at least one grantee,” said Sarah Parvanta of RTI. “This number is expected to increase once all published articles from 2018 have been catalogued in bibliographic databases.”

Since the Ice Bucket Challenge, the NIH has invested nearly $416 million in ALS Association-funded researchers. The organization has also increased its network of clinical providers from 100 in 2014 to its current 156.

When asked by RTI about the challenge’s impact on investigations, 84% of researchers said the association’s support had advanced their work “quite a bit” or “very much,” while 72% said this support had improved their ability to gain more funding.

“Thank you to every single person who took the challenge five years ago,” Balas said. “All of you are stakeholders in the progress we have made.”

12 comments

  1. Irene Fairweather says:

    I don’t feel that the ice bucket made one difference with the research of ALS. The President Of ALSA certainly gets a bigger salary. Way too much money for this association where that money can be used towards research and action. We need action now. We need money spent on research not trips to resorts.

  2. Danny says:

    I have ALS what progress was that you stated at the end of this article there’s two medicines out that barely is slow the progression down and no cures so if I’m missing something here please let me know because I’m the one on that hourglass

  3. Deb Bowyer says:

    I understand great work is being done, but that was five years ago and all the money raised since then … yet there are still no new approved treatments to even slow down the progression, let alone a cure. This is extremely disappointing for those of us who are watching our loved ones slowly die and for those suffering from this terrible disease right now (my 55 year old husband in my case).

  4. Sherry Reid says:

    I have been suffering from amyotrophic laterals sclerosis (ALS) disease for the last three years and had constant pain, especially in my knees.I was tripping and unable to get upstairs due to (ALS), My doctor put me on riluzole, letting me know there was no cure but the medication might provide me a few more months of delayed symptoms.The Rilutek (riluzole) did very little to help me. The medical team did even less. My decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of my primary physician, I would have died. There has been little if any progress in finding a cure. With the help of Organic Clinic natural herbs I have been able to reverse my symptoms using herbs, which i feel has made the most difference. The ALS natural formula immensely helped my condition, it reversed my ALS. my slurred speech. And then the inability to eat without getting choked, and the Pains. gradually disappeared. Visit Organic Herbal Clinic via their official web-site I’m now playing golf again. and i turned 68 today. DON’T GIVE UP HOPE!!

    • Deb Bowyer says:

      Sherry Reid — What are you taking that reversed your symptoms?! I googled “Organic Herbal Clinic” but don’t know what to look for that might help my husband. Please share so others can be helped as well.

    • MEC says:

      My sister passed from ALS. You sound just like her. I am thrilled to learn natural medicine has helped. More people need to know this. I wish we had, but that was 20 years ago. Best of luck to you.

  5. Anet Tallon says:

    Recently I cared for a patient affected by the malignant respiratory onset firm of als. I was horrified and he was petrified that there still is nothing to reduce the severity and speed of this form. I would like to see more time thrown at this problem rather than just telling people to go home and dIE like he was.

  6. Jack says:

    Riluzol with Lyrica; the former taken on an empty stomach before breakfast and dinner, the latter taken after breakfast and dinner. These two seem to be working well together. The riluzol is 50mg/dose, and the Lyrica is half that. Stem cell, gene therapy, and drug trials are still in the offing, but there are no guarantees I would like to get into the inclusive bunch versus the excluded group. I think within reason and safety’s sake, all trials should be open ones. Sometimes, the risk factors are certainly worth it; come on man, we have ALS!

  7. Dave Reckonin says:

    The narrative coming from the ALS Assoc, and RTI is fundamentally BS.

    The Ice bucket Challenge was a terrifically effective form of fund-raising, so Bravo to all those who got soaked and frozen, and donated.

    And yet… we only have Riluzole which was launched 20 years ago, and Radicava which was designed to help stroke patients. Neither will help a pALS who has had symptoms for 15 months or more.

    I think we have to be realistic and perform a translation into common sense when it comes to these declarations from research bodies and PR projects. The extra funding provided by those intrepid ice water lovers has resulted in the discovery of more symptoms. No causes of ALS have been discovered but the effect on several genes has been identified.
    The Big Trick is surely to find i) what caused those genes to go wonky, and ii) how can those genes be modified back on to the straight and narrow with hopefully a beneficial effect on the patient.
    Given the scatter -gun approach to ALS research I think we can be forgiven for thinking that researchers are certainly far from being focused on gene therapy and are trying all sorts of avenues to discover a cause. A supporting factor in my argument would be Dr Bedlack’s investigation of the effects of Lunasin on pALS, which was not only proved ineffective, but the very existance of which smacked of desperation.
    To proclaim the discovery of new symptoms as advances towards discovery of cause and cure is a cruel trick to play on desperately ill patients. Little wonder the ‘natural herbs reversed my ALS’ crowd of dollar-seeking deplorables focuses in on the plight of vulnerable pALS, circling like vultures.

    A ‘50% increase in clinical trials’ claim is probably correct but what’s actually happening in ALS research is a game of Blindfold Darts.

  8. Randy says:

    If ALS had the resources and funding like Cancer does, we would be closer to a cure. How many TV commercials are about ALS? Every commercial is about curing cancer, not one about ALS. The cancer treatments are tremendous.
    It’s been 5 years since ice bucket and no new treatments. The new challenge for ALS funding is called Pie in the face. very researcher should be doing it. ALS is LONG overdue.

  9. Theresa Cross says:

    Drugs take a long time to go through trials and approval. The money raised by the bucket challenge is helping in many areas. Research in the causes is one area that has grown and they now know two genes that are involved in Familial ALS diagnosis. The challenge raised awareness as well and though there is no cure and movement is slow things are happening.

  10. MEC says:

    So sorry, Danny. My sister had ALS. I know you must be frustrated. At that time, there was no medicine. I hope something is found to help. I know you must feel your future is bleak. Let’s hope some researcher has a “ta-da” moment.

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