The Ice Bucket Challenge: A Former ALS Association Staffer Reflects on the Disease and the Organization

I first met someone living with ALS at the end of my first week on the job with The ALS Association in 2001.  Stop ALSMy boss drove me to a lovely home in Beverly Hills and introduced me to Neil Brourman.  Neil had been a successful ophthalmic surgeon until he was no longer able to operate due to ALS.

When I first saw Neil, he was lying on a bed in the middle of a large room inside the home, hooked up to machines.  There were several nurses buzzing around him, continually suctioning the saliva he could not swallow that dripped out of the mouth he could not close.  His eyes were wide open, staring straight ahead.  The nurses were putting drops into those eyes, which he could not blink, to keep them moistened, and then manually blinking his eyes for him.

Neil could no longer move, much less speak.  But as with most people with ALS, his mind was working just fine, although you would never know it.

That was my introduction to amyotrophic lateral sclerosis, ALS.

Over the course of the next seven years working at The ALS Association, I would meet other people with ALS.  Through my role as a fundraiser, I also met the families and loved ones they left behind.

Like the woman defined by her lifelong love of music, still teaching piano in her 80s, who lost her husband to the disease.

Like the man who remodeled and furnished his home in southern California together with his wife and who, having lost her to ALS, cried every time I met with him because every room in that house (where he continued living) reminded him of her.

Like the couple back east who lost all four of their adult children to a particularly devastating form of ALS called familial ALS.

The stories were different, yet they all shared similarities:  the feeling one day that something wasn’t quite right with the body.  A weak arm.  A foot that wasn’t working properly.  Months of tests with numerous doctors.  Finally a neurologist familiar with ALS would recognize the telltale symptoms and make the diagnosis.

Then, the crushing realization that prognosis from time of diagnosis is two to five years.  And during that time, muscles would slowly stop working.  Speech would slur.  A wheelchair would be inevitable.  The wrenching decision whether or not to go on a ventilator to assist with breathing.

Yet through it all, the stories of those struggling with the disease were filled with hope – hope of a cure, or at least a treatment to slow the disease.  And, faced with a nearly certain death, those with ALS would manage to enjoy life, enjoy family, and attempt to spread the word about the disease.

The challenge in getting to a cure is, there just aren’t that many people with ALS compared with other diseases with greater public awareness.  It is estimated that about 30,000 Americans at any given time have ALS.

Fundraising for ALS was made more difficult both by the lack of awareness and by the relatively small ALS community.

To make matters even more challenging, multiple ALS organizations were also raising funds for research, creating confusion in the philanthropic marketplace for a disease whose natural donor base was already small.  The Muscular Dystrophy Association, Project ALS, and the ALS Therapy Development Institute (TDI) enjoyed some success at various points in getting attention while at the same time attempting to out-do The ALS Association and one another.

When not competing with other ALS organizations, The ALS Association struggled with in-fighting, like many charities with a “federated” structure do.  The National Office and its network of local chapters, while sharing the same mission. were often at odds, and often over money.

The perception among the ALS community was that The ALS Association was slow, stodgy, not funding research quickly enough, and not funding the right kinds of research.

It wasn’t for lack of trying.  When I was hired, The ALS Association had just launched a major initiative, The Lou Gehrig Challenge: Cure ALS Research Campaign, to raise money for a new “fast-track” research program – new, that is, to The ALS Association.  Project ALS and ALS-TDI were funding similar research already.

Still, it wasn’t enough.  Numerous smaller organizations would be formed over the years by those in the ALS community frustrated with the pace of research and believing they could do it better themselves.

Which brings me to the ALS Ice Bucket Challenge and why it is one of the most remarkable stories in philanthropy in recent years.

Remarkable because The ALS Association didn’t even come up with the idea.  Fortunately its Massachusetts Chapter had a relationship with Pete Frates, the former Boston College baseball player who developed the disease and who is credited with the origins of the challenge when his friends posted videos of themselves on social media pouring ice water on their heads in his honor, to raise awareness.

No one could predict how this thing would explode over the past few weeks.  When something goes viral on the Internet – whether Gangnam Style, What Does the Fox Say, the Apparently Kid, Grumpy Cat, you name it – it happens involuntarily and spontaneously.  So it has been with the ALS Ice Bucket Challenge.

The Association first posted a news item about the Challenge on its web site on August 6, just as it was beginning to spread.

I first learned of the Challenge on Tuesday, August 12, when a current staff person with The ALS Association asked if I had heard about it.  I had not.

I blogged about it that night – with more than a twinge of pride that my former employer was finally getting some recognition.

That Friday, I got challenged.  I completed the Challenge on Saturday the 16th.  I also made a donation.

It is now a week later, and The ALS Association reports donations in excess of $62 million since July 29, compared with $2.4 million in the same period a year ago.  For those who are skeptical of whether the Challenge is raising money, take it from someone who has raised money for ALS – this is an astronomical sum for the Association.

As for awareness, ALS is now a household name.  You can’t buy that kind of awareness.  It is a marketing person’s wildest dream to have that level of brand awareness – and the awareness is growing despite not using the one thing with which the disease has most commonly been associated, the name of Lou Gehrig.  This isn’t the Lou Gehrig’s Disease Ice Bucket Challenge.  It’s ALS.

What organization can say that former Presidents, major celebrities, philanthropists, CEOs of major corporations, sports figures, and everyday people are all doing the same thing – over and over and over – to raise awareness for a disease that strikes so few?

What organization can say that it has seen its fundraising spike 25 times (and still growing) over the prior year – for something that essentially cost the organization nothing (although the Association is presumably spending money to keep the Challenge going as long as possible)?

Other organizations will attempt to repeat the phenomenal success of the Ice Bucket Challenge but will find it difficult.  This was a perfect storm of elements – starting with the simplicity of the Challenge itself making it possible for anyone to do it quickly.  That it happened in the dog days of summer, using social media in the way social media was designed to be used (connecting us with each other), and that part of the objective was to nominate others so that the Challenge would continue and multiply, contributed to its success.

The onus is on The ALS Association to use this infusion of dollars in a prudent but expedient manner.  Research is costly and slow.  Over a million new donors have placed their trust in the Association to fund research – more of it, a lot of it – to strike out this disease.  The risk is that the Association will misuse the goodwill of everyone involved with the Challenge, as other organizations have done after seeing a dramatic spike in donations.

The events of the past month have forever changed The ALS Association, and I am confident that they will do right by their new donors and their newfound fame.  After all, this is an organization – until recently, one of many disease-focused charities toiling away in relative obscurity – that ultimately wants to put itself out of business.

The success of the Ice Bucket Challenge has given The ALS Association an unexpected opportunity to do just that.

Comments or feedback?  Contact me on Twitter @juanros.

UPDATE (8/29/14): Donations to The ALS Association have reached $100.9 million.

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