By ELLEN T. TORDESILLAS
TODAY’S fad is the ALS Ice Bucket Challenge.
ALS stands for Amyotrophic lateral sclerosis described in a website on ALS as “a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.”
A friend who has a member of the family afflicted with ALS likened the patient to “a vegetable.”
ALS is also known as “Lou Gehrig’s Disease” after American baseball great Lou Gehrig (June 19, 1903 – June 2, 1941) who suffered from that incurable disease.
The ALS Ice Bucket Challenge is an activity conceived by New Yorker Pat Quinn and his friend, Pete Frates, both afflicted with ALS.
Quinn, who was a guest of ABC’s Good Morning America last week, said he has lost a lot of muscle, his arms and hands are weak, and he has a constant neck pain. Frates, formerly Boston College baseball captain can no longer walk or speak.
In Ice Bucket Challenge one is to post a video in social media being dumped a bucket of ice water on the head. One can also do it on himself. Then he issues a challenge to two or three persons to do the same within 24 hours or else donate $100 to ALS Association (http://www.alsa.org/about-als/what-is-als.html).
Some do both – get drenched and donate to the ALS Association.
Yesterday, I saw on Facebook movie director Joey Reyes accepting the challenge of Melvin Mangada. He drenched himself with a pail of ice water and challenged actor Manny Castañeda and PR practitioner Girlie Rodis to do the same.
Last week, the Philippine’s pride, Lea Salonga, got dumped on with iced water by husband Robert Chien after she was challenged by Il Divo singer Urs Buhler.
She in turn challenged “Glee” actor Darren Criss, her former leading man Aga Muhlach, and her fellow “The Voice of the Philippines” coaches Geronimo, Allan “apl.de.ap” Pineda, and Bamboo Manalac.
In the video, Lea said there is something personal for her about her taking the ALS Ice Bucket Challenge: her husband’s uncle, Tommy Lee, died of ALS.
“It is out of love for him that we are both doing this. We have seen what it (ALS) can do and how it can impact a family, so this is why I’m doing this and experiencing temporary discomfort for something very important,” she said.
It is said that the person sick with ALS feels like being submerged in ice water.
A lot of celebrities – from Oprah Winfrey to Jennifer Aniston to Jennifer Lopez to Rihanna and many more have accepted the challenge and got drenched.
Star Trek actor Sir Patrick Stewart accepted the Ice Bucket Challenge but with a classy twist. In the video, he was seen quietly writing a check. Then he pushed aside the check book and pulled in a silver bucket filled with ice. He got a glass, used the tongs to place two ice cubes in the glass, poured whisky, and raised his glass to the viewers.
Many Philippine celebrities have also taken the ALS Ice Bucket Challenge, among them Kris Aquino, Marian Rivera, Dingdong Dantes, Anthony Taberna.
Even public officials like Justice Secretary Leila de Lima and Internal Revenue Commissioner Kim Henares responded to the challenge.
There are, of course, those who got themselves drenched for publicity and not making the effort to know about ALS. But that does not in anyway discredit the noble idea that inspired the activity.
ALS Ice Bucket Challenge originator Quinn said he is overwhelmed by the response to his ‘challenge.” He said as of Aug. 25, “the ALS Association reports that it has received $15.6 million in donations compared to $1.8 million during the same time period last year (July 29 to Aug. 18). These donations have come from existing donors and 307,598 new donors.”
ALS was the subject of a 1997 bestseller “Tuesdays with Morrie”, a memoir of sports columnist Mitch Albom about the time he spent with his 78-year-old sociology professor, Morrie Schwartz, at Brandeis University, who was dying of ALS. The book was made into a TV movie in 1999, co-produced by Oprah Winfrey’s Harpo Productions.
In the Philippines, awareness about ALS is low although there are a number of Filipinos afflicted by the disease. More preoccupied with l diseases that afflict the poor communities in the country, it is understandable that as Health Assistant Secretary Eric Tayag admitted, they don’t even have available data on ALS in the country.
That is precisely the objective of ALS Ice Bucket Challenge:raise awareness and funds for research on the fatal disease. With more knowledge about the disease, hopefully a cure would be found or at least alleviate the suffering of the afflicted.
