Amyotrophic lateral sclerosis – ALS to most of us, is a devastating neurodegenerative disease that has gained a great deal of publicity in recent weeks. Popularly known as Lou Gehrig’s Disease after the famous baseball player, it affects the motor neurons, and causes death usually within two-five years of diagnosis.
Up to that point, the patient experiences a progressive loss of muscle function, and become gradually paralyzed.
In August of 2014, a viral Internet video phenomenon surfaced called the ALS “Ice Bucket Challenge.”
Participants would dump a bucket of ice water onto themselves, donate $10 to the ALS Association, and challenge three others to do the same. Those who do not respond to the challenge are expected to donate $100.
The challenge has received some criticism for a variety of reasons. Perhaps the most dramatic reason concerns the severe drought that now blights the state of California. Some believe the challenge worsens an already dangerous situation.
But in reality, the challenge is a small drop in an ocean of water waste. The California government’s website states, “In some areas of the state, 50% or more of daily water use is for lawns and outdoor landscaping.”
Why sacrifice financial and emotional support for those who need it most, when we can forego washing our cars or watering the grass? A yellowed lawn is a small price to pay for a life.
Another concern is that the money donated is not being used responsibly. According to the ALS Association’s 2014 financial statement and IRS forms, (which are freely available on their website) 79 percent of their expenditures go toward meeting the goals of the Foundation. These goals include education about the disease (32 percent), services for the patients and their communities (19 percent) and the medical research itself (28 percent).
The other 21 percent goes towards fundraising and administration. Keep in mind, without the money spent on fundraising, little or none of this would be possible. For those who still have concerns, the foundation guarantees that donors may stipulate exactly how their donation may be used.
Education about ALS is the first step toward finding a cure, and improving the quality of life for the patients in the meantime. “Know thine enemy” has been an adage for centuries, but it doesn’t apply to combat alone–Knowledge is the basis for the research being done towards a cure.
The more we know about the disease, the faster we can find a way to overcome it. For patients and their families, knowledge about what exactly is happening to them can empower them, and grant them some degree of comfort in an otherwise terrifying situation. Instead of facing the unknown, these brave souls can go about the business of living fully.
Educated concerns about charities are responsible. People have been scammed in the past, and money has been wasted. But when the facts have been checked, and the cause is true, how can we justify withholding our support?
