UNION COUNTY — A challenge that has swept the world — including Union County — has raised awareness and millions of dollars to fight a particular disease.
The ALS Ice Bucket Challenge involves people getting doused with buckets of ice water on video, posting the video to social media, and then challenging others to do the same — in an effort to raise awareness of ALS. Those who refuse to take the challenge are asked to make a donation to the ALS charity of their choice. Either way, the cause is furthered.
The trend began when Beverly, Mass. resident Peter Frates and his family helped make the ALS Ice Bucket Challenge go viral on social media sites Facebook and Twitter. Frates, 29, has lived with ALS since 2012, and he has worked with the Massachusetts chapter of the ALS Association. Frates is a former Division 1 college baseball player who tirelessly spreads awareness of the disease ALS (amyotrophic lateral sclerosis) — also known as Lou Gehrig’s Disease.
“This is a creative way to spread ALS awareness via social media and in communities nationwide,” said Barbara Newhouse, President and CEO of The ALS Association. “We thank Pete Frates and his family for getting so many people involved in spreading the word about ALS.”
As of Wednesday, Aug. 20, The ALS Association has received $31.5 million in donations, compared to $1.9 million during the same time period last year (July 29-Aug. 20). These donations have come from existing donors and 637,527 new donors to the association.
“We have never seen anything like this in the history of the disease,” Newhouse said. “We couldn’t be more thrilled with the level of compassion, generosity and sense of humor that people are exhibiting as they take part in this impactful viral initiative.”
Numerous celebrities — ranging from Ethel Kennedy to Justin Timberlake to WWE Chairman Vince McMahon — have taken part in the challenge. Those who participate are asked by the ALS Association to use the hashtags #IceBucketChallenge, #ALSIceBucketChallenge, and #StrikeOutALS.
“While the monetary donations are absolutely incredible, the visibility that this disease is getting as a result of the challenge is truly invaluable,” Newhouse said. “People who have never before heard of ALS are now engaged in the fight to find treatments and a cure for ALS.”
“With more people aware and more people engaged in the fight against ALS, we are poised to work collaboratively with not only other ALS organizations, but also with pharmaceutical companies and academia to expedite new treatments for people impacted by the disease,” Newhouse continued.
One local Union County family has participated in the challenge in memory of a loved one who passed away due to ALS in 2001.
Robert Grady — who was known to some as “Shady” and is the namesake of local business Shady’s Food and Spirits — was diagnosed with ALS in 1999 after experiencing symptoms in early 1998.
At the onset of ALS, the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include muscle weakness in hands, arms, legs or the muscles of speech, swallowing or breathing; twitching (fasciculation) and cramping of muscles, especially in the hands and feet; impairment of the use of the arms and legs; “thick speech” and difficulty in projecting the voice; and in more advanced stages, shortness of breath, difficulty in breathing and swallowing.
Robert’s family wants to raise awareness and ask people to donate to the ALS Association for research.
“The statistics are still the same today as then,” said Robert’s niece, Denise Grady. “That isn’t good for a sporadic disease.”
Denise also said the ALS Ice Bucket Challenge is fitting.
“The cold water makes so much sense to me after watching Robert deteriorate,” she said. “A few seconds of being rigid is nothing compared to what I saw him go through.”
For more information, visit www.alsa.org.
The ALS Association’s mission includes providing care services to assist people with ALS and their families through a network of chapters working in communities across the nation and a global research program focused on the discovery of treatments and eventually a cure for the disease. In addition, The Association’s public policy efforts empower people to advance public policies in our nation’s Capital that respond to the needs of people with ALS.