The Ice Bucket Challenge inspired nearly 308,000 new donors to the ALS Association. The first task was getting to know these new donors through audience research and analysis. This viral phenomenon is the 'Ice Bucket Challenge,' which is being taken on by growing numbers of men, women, and children to help bring awareness to amyotrophic lateral sclerosis (ALS), also. In one of our recent blog posts, we discussed several key points that made the ALS Ice Bucket Challenge a successful campaign.With the incredible amount of donations received, the virality it gained through social media, and the immense support and participation by celebrities, the ALS Ice Bucket challenge showed nonprofits that even the simplest ideas can lead to huge successes. MY ALS HEALING TESTIMONY My mouth is short of words, i am so so happy because DR.COLLINS has healed me from ALS ailment which i have been suffering for the past 6years now, i have spend a lot getting drugs from the hospital to keep me healthy, i have tried all means in life to always become ALS negative, but there was no answer until i found DR.COLLINS the prince of africa who provide me some. The Internet sensation of the year — the Ice Bucket Challenge — hasn’t melted just yet, as donations continue flowing to the ALS Association and its leaders remain awestruck over the gush of.

1. Als Ice Bucket Challengeteach To Be Happy Now
2. Als Ice Bucket Challengeteach To Be Happy Chords

The Ice Bucket Challenge — those videos of friends, family members, and celebrities dumping ice water on themselves to promote awareness and funding of amyotrophic lateral sclerosis (ALS) research — was a veritable media sensation in 2014.

Now comes the heartwarming follow-up: According to an ALS Association news release, those donation-inducing videos helped fund a discovery that many news outlets are calling a “breakthrough”

• Reuters: Ice Bucket Challenge credited with ALS breakthrough

• Guardian: Remember the ice bucket challenge? It just funded an ALS breakthrough

Als Ice Bucket Challengeteach To Be Happy Now

• Independent: Ice Bucket Challenge funds major breakthrough in ALS research

• KMSP Minneapolis: Ice Bucket Challenge helped fund ALS breakthrough

• Washington Post: The ALS Ice Bucket Challenge is working

By all accounts, this is important basic research that may one day form the underpinnings of an effective therapy. But then again it might not — and if past experience is any guide it probably won’t. And so we must step back for a moment and examine how this research is being framed and how that framing affects public perceptions and, ultimately, policy towards research funding.

It took us mere moments to find two experts who — after taking a closer look at the actual study results — emphatically denounced the use of “breakthrough” to describe the findings and suggested that readers were likely to be misled.

Vinay Prasad, MD, MPH, Assistant Professor of Medicine at the Oregon Health and Sciences University told us:

This is no breakthrough, and another sad and embarrassing example of academics and the media trumpeting very preliminary basic science work far beyond what they ought to. From the paper, the authors state “NEK1 has been previously described as a candidate gene for ALS. Here our findings show that NEK1 in fact constitutes a major ALS-associated gene with risk variants present in ~3% of European and European-American ALS cases.”

In other words, the authors do not identify a NEW gene of interest– it was ALREADY implicated– and even their work suggests it is a rare occurrence ~3% in ALS cases. Moreover, the gap between this finding and improving outcomes for patients remains as far as going from the earth to pluto. Many many many genes have been implicated like this in many many many diseases, and we still have not seen any novel therapies making any measurable impact even after many many years.

Similarly, Susan Molchan, MD emphasized that such findings still leave us a very long way from any potential therapy for ALS patients.

Many genes are known to be associated with many diseases, many much more strongly than in a few percent of cases as here, for example early-onset Alzheimer’s and Duchenne’s muscular dystrophy. ‘Association’ does not mean they are a cause, that is one leap, and even if the gene did cause the disease, developing a drug, as has been attempted for Alzheimer’s and Duchenne’s for decades, is another. I thought the quote at the end of the Guardian article gave it some perspective in saying we need to know much more. But in general, say NO to the word “breakthrough.”

Looking at the reactions to the “breakthrough” framing from everyday people on Twitter, we also see a vast disconnect between their perceptions and what the research actually means for patients. These tweets are a stark example:

“Happy this worked, just wish it had back in 1998 when my Dad died from ALS”

“Now there’s a cure for it”

“I will admit, I was a skeptic. Glad to see the #icebucketchallenge really worked.”

“Gosh, I hope this is true!”

What is true? That a gene has been discovered that might lead to a treatment – but probably won’t – for a variation that might be present in maybe 3% of all cases of ALS?

So much of the coverage seems to be praising the innovative PR aspect of the Challenge and reveling in its apparent vindication against naysayers. Why aren’t more reporters digging into what the findings actually mean … and what they might not mean?

Not only does this shallow, cheerleading style of reporting mislead readers as to what the research actually found, but it could also have a long-term detrimental impact on the way that research is funded in the United States.

Prasad says that headlines claiming the Challenge “worked” do a “grave disservice” by “contributing to false ideas about science and funding by the public.”

Given the widespread interest in the ice-bucket challenge, we all want, we hope, we wish those funds to lead to some improvement in outcomes for patients with this conduction. But we have to avoid misleading the public that science funding leads to breakthroughs on this time frame, and for these miniscule funds. The challenge raised 125 million for the ALS organization, which is a drop in the bucket of science funding.

We have to be careful not to equate philanthropy with adequate research funding. The current state of US federal funding for science is in crisis, and dumping ice over our heads, and donating to the charity or disease du jour is not a substitute for a robust science and clinical research agenda. It may give a boost to one disease in one year, but we have lots of diseases to work against, and science takes many years.

So here’s a re-cap:

This is intriguing and important research.

News coverage didn’t do anyone a service by trumpeting the social media and ice bucket challenge PR “successes” while failing to offer context on what the finding means – and what it may not mean, or, what we know but what we still don’t know about ALS.

The words used in news stories matter. We have shown how “breakthrough” led some on social media to spread news of a cure – and that is wrong. We’ve pointed to other instances where even the FDA’s use of the term breakthrough leads to public confusion

We all can do a better job of communicating progress in research – and evaluating claims of progress in research – without raising false hopes and making statements that cannot be supported by evidence at this time.

Comments (22)

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Susan Presley

What’s funny about that particular article is the conclusion: That words in news stories matter. Yet, you don’t offer any positive solutions. Not “Raise more money so they can keep working” or “Change the research so this or that can be improved.” Rather, you’re just there to bash the articles that are out there.
Words matter, HealthNewsReview, and you’re not using them very well.

Mike Brannen

August 1, 2016 at 9:05 am

As a member of the media, I believe in transparency and honest reporting. When we tell the truth, it is the public’s prerogative to reject facts (as stubborn and unwelcome as those facts might be). But when we willingly- or unwillingly- report inaccurate or misleading information, we have *earned the public’s scorn, ridicule, and mistrust. It is insincere of the media to report false information for the sake of protecting people from reality.

My uncle passed away this year of ALS. It is a complicated disease, but I hope people understand efforts like the Ice Bucket Challenge to raise money for research are never in vain.

Debi Heacock

My beloved sister-in-law was devoured by ALS and lost her life to it. I began crying when I saw the post about a breakthrough, in finding a cause which means a possible cure in my mind and heart. If one ounce of that money has helped one person and their family cope with such a vicious beast then it was well worth the effort. I feel like your article dumped ice water on my hopes that no one ever has to witness the destruction ALS does to the physical body leaving the mind trapped knowing the loss of every freedom we take for granted. Did anything positive come out of the research monies? Unless you have held the hand of someone who wants to hold it back but can’t then you cannot imagine the helplessness and hopelessness. When she was dying our prayers were that someday, somewhere, someone would find the source and end this beastly disease. The Ice Bucket challenge brought joy to those of us who have loved someone who is either battling it or has died from it. It is a death sentence and she was gone 3 years after the diagnosis.

Deanne

July 30, 2016 at 8:26 pm

This article may as well have just told anyone living with ALS today to just off themselves snd be done with it. You can’t live without hope. And unless you have experienced this horror show if a disease first hand you could have nonidea the emotional pain you just caused to PALS and their families. The only thing that gets us through the day is the hope that a treatment ir cure is on the way. Otherwise I swear I woukd just shoot my self and be done with this nightmare. Shame on you.

Ken Axberg

Susan, the positive solution is to be truthful and objective when reporting news. Debi, that’s sad, but then again, don’t blame the messenger.

An interesting article that confirmed my suspicions. Too bad a lot of people seems to prefer lies and half-truths over reality.

Scott M Morgan

Why do the tweets quoted in the article lack attribution?

Susan Woolner

July 29, 2016 at 11:32 pm

Great post and thank you for pointing out the lack of transparency in reporting this study and the obscene marketing hype of this “breakthrough.” Misleading information like this hurts everyone – patients, caregivers, supportive families, funders, scientists and support organization alike. In a rush to claim success in a timetable that benefits an organizations fundraising schedule, the marketing is manipulative and disingenuous.
This is “the emperor’s new clothes” situation and while your post points out the obvious and provides an accurate assessment of the issues, you also offer concrete tools to aid in transparent reporting going forward that does not mislead. Unfortunately, it needs to be said but it’s still painful for families impacted by ALS.
The experience of watching a loved one lose everything including their final breath, leaves such a scar that anytime ALS is mentioned it reminds people how long it has been without tangible progress. No one wants real progress more than us. I was happy to see the dollars generated by the IBC flow towards the cause of ALS.
The dollars were/are desperately needed for research and advocacy that improves the lives of those fighting ALS. Unfortunately without a definitive strategic impact plan like Alzheimer’s disease has to direct how funds are spent for federal and private funding initiatives and a prioritization of the science and care initiatives it feels like we will continue to wander though this fog broken only by the foghorn of “breakthroughs” timed for each July just in time to provide a “payoff” to generate more donations.
Meanwhile we can’t fathom seeing more of our family and friends impacted by this beast.

Mary Finger

Thank you. I will celebrate when there is aa accessible treatment or cure! These headlines hurt those dealing with the reality of ALS.

Hannah Gordon

If you’re reporting on “basic research” can we start getting quoted opinions from BASIC researchers (I’d like to see a PhD..professional scientists)? Not MDs, not people that don’t do basic research…someone who actually tries to do these types of gene association studies. Anyone can have an opinion on this, but it doesn’t mean it’s correct or worth listening to.

Nancy Frates

Sorry to see that the glass half empty approach in your opinion. May and might, as an ALS family we choose to read these words in the positive and not the negative and look at it as hope not false hope. And everyone is once again talking about and donating again. Debi you have articulated my opinion with grace and truth. ANY finding in this disease is one step closer to a treatment, we have had NO discoveries in way to long.

Anita Rising

Thank you for shedding reality on this horrendous disease. I really wish people would stop toying with the hearts and minds of those who suffer with this torturous and unforgiving disease. May God have mercy on us all.

Richie Grant

Debi Heacock-your words so perfect! My sister died from this nasty disease! Kevin, why do you feel the need to spoil things-just because you & two others feel things were not worded correctly? I am raising money this year with the ice bucket challenge-my 3rd year-why you ask-because ice is nothing compared to what my sister suffered with. Shame on you-your mother should smack you! In memory of Drew Anderson 4/27/15-

Ruth Paton

Our family have lost my father, grandfather and my niece’s father who law to ALS. Maybe I have become cynical but while I read reports such as this with interest, I will believe in a breakthrough when I hear they are getting results in treating or curing the disease. I believe the ice bucket challenge also provided much needed money for charities to support sufferers more effectively and that is more than worthwhile.

Jonathan Jarry

Great work, as always. Science journalism in the traditional media seems to be getting worse. Having a background in genetics and molecular biology, I made a video detailing what the Nature Genetics paper actually shows and how it was hyped up by the media (and I quote from your refreshing article). Keep up the good work! https://www.youtube.com/watch?v=g8mdtX4RE0k

Carolyn Thomas

Good grief. Any regular reader of Health News Review appreciates articles like this for precisely the reason that some commenters here are attacking it. We count on HNR to point out the differences between reality and hype. I’ve learned from years of following your posts that whenever I read or hear the words “breakthrough” or “miracle cure” or “Dr. Oz” in a big media blitz, whatever follows will be more press release than fact.

Personally, I like facts, and this Ice Bucket challenge report simply shares more of those with us. Thank you for that.

Althea Fung

In reading the comments to this article, I think we have a case of reaching the wrong audience. It is my understanding that this site is for journalists, particularly those who cover the healthcare industry. It’s not about debunking this study or the implicit value the ice bucket challenge has on medical research. It’s evaluating the quality of the reporting on health-related topics. This is more of a teaching aid than it is a news site. It’s providing real life examples of how not to report a story and provides best practices for reporting.

If you are complaining about the “negative” views this article takes on this research, this article isn’t for you. You are allowing your emotions to cloud your understanding of the articles intent. A journalist who is committed to accurately reporting health information knows that research is slow moving.

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Als Ice Bucket Challengeteach To Be Happy Chords

I have to give props and a tip of the hat to the ALS Ice Bucket challenge. What a great way to have something go viral (thank goodness it was done in the summer and not winter as that would NOT have worked).What can that campaign teach us about member and donor engagement? The ice bucket challenge took something private, support of curing the disease ALS, and made it public. It’s one thing to give to a charity but it’s not something we always publicize. The ALS Ice Bucket challenge made things very public because we saw people dumping ice on their head AND giving to ALS. On top of that you had to challenge specific people to do the same.This was the ultimate public challenge! This is one of the key elements of how things go viral. There is a great book called “Contagious” that uses data to show the various elements regarding how things spread. One of the concepts discussed is the shift in making something go from private to public (private → public).Translation for your YMCA . . exercising and donating are usually private things. How can you make it private→public?Some exercise apps help make private→public by giving people the opportunity to “share” their work out. This can be great but people don’t always want to publicize their activity on their own social media. Think of how you can create opportunity or space to make this public. This can be through social media or even in your own facility.Donor recognition Some YMCAs post banners as a “thank you” for people or organizations that give a certain amount. This is a great way to thank organizations and individuals but what if there was a way to do this for everyone who donates? Recently, I visited a Y where construction paper was put up in ginger bread like figures with the names of members who donated. This was located on a wall in the Y under a “thank you” banner. Some members actually decorated their own if they desired. This is a great example of private→public.Could we also thank donors on our YMCA’s Facebook or Twitter account? Ask a donor how they would like to be recognized. They can opt out of social media if they like but if not, use that as a public space to thank people.Member recognition Think about how people can post their exercise publicly in your Y. Can you put a star next to someone’s name? Can you post a “member of the month” in a public place for people to see? This is great for both the person exercising and for people walking through seeing this public display of congratulations!Recognize volunteers in the same way. Think of how you can post thank you pieces for volunteers via social media or in the building. It’s a great way to thank people and let them know about the volunteer opportunities.Always ask first about recognition. We all know people who would rather not be recognized in public. It’s important to honor that. However, most will welcome the recognition.Engage your staffYour staff – full time and part time- are a wonderful resource for ideas (especially those with a millennial mindset). They can help you find fun ways to make private→public. It might not be as viral as the Ice Bucket Challenge but it can be a sustaining piece of your member and donor engagement strategy.