Ice bucket challenge
Inyo County Board accepts … Mono County Board may be next.
The ALS (Amyotrophic lateral sclerosis) ice bucket challenge came to Inyo County on September 2, when the five District Supervisors, as well as ten County department heads and elected officials, took the challenge outside of the Courthouse in Independence.
District 5 Supervisor Matt Kingsley was responsible for the challenge: his brother, Phillip, was diagnosed with ALS in April. The disease has no known cause and no cure; life expectancy is between two to five years.
“His is progressing pretty quickly,” Kingsley said.
According to the ALS Association (ALSA), ALS, also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects the motor neurons that reach from the brain to the spinal cord, and from the spinal cord to muscles throughout the body.
“When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost,” the website states. “The progressive degeneration of the motor neurons in ALS eventually leads to their death.”
Enter the ice bucket challenge.
For those who may have been trying to ignore the viral phenomenon, the ice bucket challenge requires a challenge recipient to either dump a bucket of ice water over his or her head, and/or donate money to fight ALS. The challenge recipient may then challenge others to suffer ice water or make a donation.
The challenge began gaining popularity in July and has raised $100 million in donations to the non-profit ALSA.
This represents a 3,500 percent increase from last year, according to Forbes.
While this might seem like an obvious success story, in recent months the ice bucket challenge has begun to attract controversy. The first contentious issue: concern that donations to ALSA weren’t actually going to research.
Website “Political Ears” first raised this concern, claiming that over 73 percent of donations are going toward fundraising, overhead, executive salaries, and external donations—not research.
ALSA protested this figure, noting that, according to last year’s budget (available online through the ALSA website) “The ALS Association spent 79 percent of our annual budget on programs and services … which includes 28 percent on research, one of three main pillars of our charitable work.”
The other two other pillars: providing care services to people living with ALS, and “public policy initiatives to encourage the advancement of legislative policies that benefit ALS families.”
ALSA went on to say that donors can specify that they wish 100 percent of their donation to go toward research by checking a box on the online donation form, or redirect their donation through donations@alsa-national.org.
ALSA also argued that the salaries of its executive staff are in line with those of other national charities. According to website Quartz (qz.com), this may be true. ALSA does compare favorably with its peers. The highest executive salary at ALSA is $297,288, while the highest salary at the Multiple Sclerosis Association of America is $242,304. Meanwhile the highest salary at breast cancer charity Komen is $606,461.
Quartz argued that the contention over ALSA salaries only proves that a prospective donator should do their research into a non-profit before rather than after making a donation (the article cited charitynavigator.com as a useful research tool).
The second contentious issue in regards to the ice bucket challenge: water conservation. Californians in particular are concerned that the ice bucket challenge is wasting water during one of the worst droughts in the history of the State. Some challenge recipients have gotten creative: actor Matt Damon recently accepted the challenge using toilet water, so as not to waste fresh, potable water, and also to highlight the lack of sanitation in developing countries.
Meanwhile the Inyo County Board of Supervisors held off on watering the lawn the day prior to the ice bucket challenge, and watered it with the ice water instead, Kingsley said.
A recent, dubiously scientific survey conducted by Vane on Facebook yielded still more controversies surrounding the challenge. As one of Vane’s friends, Charmaine Chua, wrote,
“There is a comparatively small payoff for the amount of money the charity is receiving …
“If we need to raise awareness about anything healthcare related, it isn’t so much disease-specific cures to relatively rare illnesses that actually end up affecting a relatively small percentage of the population, but broader structural issues. Far more people die of more common illnesses, even non life-threatening accidents, than they do of ALS every year because they don’t have access to healthcare, can’t afford it, or don’t receive treatment in a timely manner.”
Meanwhile a medic friend, Emily Bebbington, noted that the focus on ALS—known internationally as motor neuron disease (MND)—is directing funds specifically toward American research.
“In most of the rest of the world MND is [the] preferred [term],” she wrote. “Although any donation to charity is worthwhile, there is fantastic and groundbreaking research happening all over the world in this field, and it would be good if this wealth of funding was distributed throughout the world.”
Then again, several friends responded in favor of the ice bucket challenge, pointing out the positive effect it has on those who suffer from ALS.
These friends argued that while those who suffer from ALS may be in the minority—only about 5,600 people in the U.S. are diagnosed each year, according to ALSA—finding a cure is no less important, not just for those who suffer from ALS, but also for their loved ones.
Consider this: in the four days Vane put this story together, she discovered at least six people with a personal connection to someone suffering from ALS. Meaning more people are affected by the disease than just those who suffer from it.
Mammoth resident Lacey Dibble noted that her grandmother died of ALS (the disease is genetic), and that a friend was recently diagnosed with the disease in January.
Resident Kristin Ehert’s ex-husband was diagnosed with ALS almost 12 years ago, at the age of 27. “He went from a college athlete to not being able to walk in a year and a half,” she said.
He and Ehret were planning to marry after Ehret finished a teaching credential program, “But he told me, ‘I don’t want to be pushed down the aisle, I want to walk,’” she recalled. The two were married for six and a half years, until Ehret “had a mental breakdown and decided I needed to have my own life,” she said.
Her ex-husband now resides in a care facility, where Ehret and family visit him regularly. He, Ehret, and family and friends also participate annually in an ALS fundraising walk.
“It’s a pretty abysmal existence,” she said. “He’s completely mentally there, and he has full sensation, he just can’t move. Most of everything he does, he does through a computer he controls with his eyes.”
In Ehret’s mind, the ice bucket challenge is not only raising funds, but also raising awareness. For 12 years she had to educate others about the disease, and often found that the more she told them, the less they wanted to know. “One thing the ice bucket challenge has done is people have finally heard of it, so they don’t have to ask so many questions,” she said.
As for concerns about water conservation during California’s drought, she said, “If someone dumps a gallon of water over their head, just don’t flush the toilet once. If you’re really concerned about water conservation, there’s so much more you can do to conserve water than just not do the ice bucket challenge.”
Supervisor Kingsley, who said the Inyo County Board’s challenge raised a little over $3,000, agreed with the value of the challenge.
“I think sometimes it’s easy to find fault with things like this,” he said. “I know some people are critical of our actions. Today [Tuesday] is really about having someone you love become the victim of an incurable disease.
“I think people should relax a little,” he concluded.
The Inyo ice bucket challenge participants nominated the Mono County Board of Supervisors, Bishop City Council, and … the press. Those interested in making a donation can visit ALS.org for more info.
