Everyone, it seems, is pouring a bucket of ice water on themselves — and filming the humanizing experience to help raise awareness and funds to fight a rare medical condition.

And it is easy to get a twinge of pleasure watching a roster of people get doused that includes Michael Jordan, ex-President George W. Bush, Vogue editor Anna Wintour, Tom Cruise, Oprah Winfrey, Charlie Sheen, Victoria Beckham, Bill Gates, Anne Hathaway, Verne Troyer, Ricky Gervais, Justin Bieber, Britney Spears, Robert Downey Jr., Kevin Durant, Jack Black, Usain Bolt, Steven Spielberg, Mark Zuckerberg (called on by New Jersey Gov. Chris Christie) and Vin Diesel, who challenged Michelle Obama, Angelina Jolie and Russian leader Vladimir Putin.

Locally, a growing number of people, including artists and actors, are taking part, from Jack Johnson to Daniel Dae Kim and some friends of his.

Fuku, Sandy and Ted Tsukiyama in better times, before the family learned of the ALS diagnosis.

Courtesy of Sandy Tsukiyama

For those who don’t know, each person who takes the “ice bucket challenge” also makes a donation to an organization seeking a cure for ALS and challenges several other people to do the same. Pete Frates, who was one of the instigators of the campaign, and who may have issued the first challenge, surely never imagined that his plan to bolster awareness about this rare condition would raise more than $50 million dollars in donations in a matter of weeks.

It all leads to a natural question: What exactly is ALS? Amyotrophic lateral sclerosis is a neurological condition where the nerves in the lateral portions of the spinal cord that relay messages from the brain to the rest of the muscles of the body die off, leading to progressive paralysis.

There are about 30,000 people in the United States with ALS, and approximately 5,600 new cases each year, which averages out to about 15 new cases every day. ALS is better known to earlier generations as Lou Gehrig’s disease, for the legendary early 20^th century baseball player who touchingly ended his career as he battled the disease before dying two years later.

Here in Honolulu

Up until this spring, Fuku Tsukiyama, 89, was still active with her children and grandchildren, and even playing tennis.

But in January her daughter Sandy noticed that Fuku had begun to slur her words. Doctors thought she might have suffered a stroke, but testing didn’t back that up.

As her speech deteriorated, her left hand stopped moving. The family figured something was seriously wrong. Sandy, a teacher at Roosevelt High School, was out of school on summer break just one day before her mother came home with the news. She had been diagnosed with ALS.

Fuku never expected to end up so debilitated. Now she can hardly swallow and isn’t expected to survive until her 90th birthday in October.

The family reached out to a former classmate of Sandy’s whose mother had died from the same disease to find out what to expect. Sandy said hearing about the coming decline was difficult, but it was important for the family to understand what they would be up against. Fuku’s husband, Ted, who still drives at 96 and exercising daily at the YMCA, was devastated.

Fuku, who never wanted to be a burden on her family, was enrolled in hospice care. She never expected to end up so debilitated. Now she can hardly swallow and isn’t expected to survive until her 90th birthday in October.

Her case is somewhat unusual because of her age; she was diagnosed with ALS much later in life than most others who suffer from it. The condition generally hits people between the ages of 40 and 70, and has a 5-year survival rate of just 20 percent.

Sandy has heard about the ice bucket awareness and fundraising campaign — a few friends even posted their bucket challenge videos. She thinks any effort to boost awareness about ALS is welcome. After all, families responding to the needs of a loved one who suffers from ALS face astronomical care costs; full-time care can add up to $10,000 a month or more.

Locally the ALS Ohana is reaching out to people in Hawaii through their website that helps friends and family of people stricken with the condition to understand what is happening. Sandy’s father recently went to one of their support groups and said he intended to take other family members with him in the future.

There is no one way to deal with an ALS diagnoses. Doctors told local painter Peggy Chun she had it in 2002. (In her case it was genetic, but the condition can strike anyone, and it usually hits people in the prime of their lives.) Despite the progressive loss of the use of her muscles, Peggy was known for her determination to continue her work, even painting by holding the handle of her brushes with her mouth in an effort to continue expressing herself until the end. And she found a way to say goodbye to her friends on her own terms.

But there is no avoiding the harshness of ALS. Sandy and her family are focused on spending as much time with Fuku as they can during these, her final days.

So here is hoping that the funds that have been raised through the viral feel-good ice bucket campaign will throw cold water on the progression of this brutal condition.

For more information head to www.alsa.org, www.alsohana.org, and www.alsconsortium.org.

The video below tells the story of the origins of the ice bucket challenge.