Why viral challenge is just a drop in the #icebucket

Few people ever saw famed New York Yankee firstbaseman Lou Gehrig in his terminal stages.

ALS, the progressive neurodegenerative disease that is “better known as” or “often referred to as” Lou Gehrig’s Disease, has long been epitomized by the baseball legend. Gehrig resigned from his career at age 36 and chose to fight his battle behind a curtain that he drew shut soon after delivering his iconic “Luckiest Man on the Face of the Earth” speech, later recited by actor Gary Cooper in the 1942 film Pride of the Yankees.

Though Gehrig’s legacy lends a courageous face to the disease, it does little to expose its horrors. While many who know of “the Iron Horse” know that he died of ALS, few know much about his end-of-life experience.

ALS is not a diagnosis so much as it is a death sentence. For those who have it, it is like being taped at the mouth and buried alive, muscle by muscle, while retaining perfect cognitive clarity. It is estimated that only half of the general population has heard of ALS, which means that right now there are 30,000 people fighting this disease as unsung heroes.

Awareness has been boosted in recent weeks by the phenomenon known as the Ice Bucket Challenge, in which people post videos of themselves, mostly to social media websites, pouring buckets of ice water over their heads. Those who are challenged by friends but decline to get themselves cold and wet within 24 hours are asked to donate $100 to ALS research. As of mid-August, Time Magazine had reported that $12 million had been raised as a result.

Yes, the #icebucketchallenge is a fad. No, it won’t last forever. Yes, it is still a good thing.

ALS research has, historically, been severely underfunded. It affects fewer than 200,000 people nationwide, and is therefore a catalogued “orphan disease.” Pharmaceutical companies are hesitant to put their resources into curing or treating those diseases because there is relatively little financial incentive for the private sector to develop and market new medications. Common diseases are more lucrative investment opportunities.

According to the National Institute of Health, ALS grants, contracts, and other funding mechanisms total $40 million, compared to the $5.4 billion that is awarded to cancer research. With insufficient federal or state funding, many ALS research institutions depend on philanthropy to sustain their operations.

But the funding that this challenge brought in has not only supported organizations that conduct stem cell and gene silencing clinical research, but nonprofit organizations that improve the quality of life for those already living with the disease.

Having grown up with a father battling ALS, I know firsthand the financial stress that patients and their families endure. We had to beg our insurance company to cover assistive technologies and caregivers. My father’s power wheelchair alone cost $22,000, and that was valued 16 years ago.

Then let’s not forget the costs of a mobility van with an extension ramp, the construction of a wheelchair-accessible home addition and bathroom, a shower chair, a Hoyer lift, a neck collar, a tracheotomy and feeding tube implant, and a rotation of four private duty nurses, not to mention the frequent, extensive hospital stays.

While the Ice Bucket Challenge has gone viral, and thousands of videos ranging from hilarious to slightly embarrassing have been posted online, there are some who have publicly questioned the motivations of its participants: some have called the challenge narcissistic or simplistic.

But I say to those who are questioning its value: keep talking. Loudly. Denounce it for all you’re worth. You too are helping to cultivate a national conversation that is desperately overdue. The more attention that is brought to this devastating illness — the more money that can be generated — the better.

And for the rest of you: let’s keep it going. I challenge you to think of the funniest or most outrageous challenge you can. Sexualize and sensationalize. Do whatever it takes to get one more person talking about ALS.

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