Central Jersey answers Ice Bucket Challenge for ALS
As of Monday, the ALS Association has received $15.6 million in donations, compared to $1.8 million during the same time period last year
- Beverly, Mass., resident Pete Frates, along with his family, helped to make the Ice Bucket Challenge go viral
- There is no cure and only one drug approved by the U.S. Food and Drug Administration (FDA) that modestly extends survival
- Stockton resident and former Bernardsville Public Library Youth Services Librarian Michaele Casey has had personal, and tragic, experience with the disease.
- "She didn't want this just to be a stunt. She wanted to have others learn about it, as well."
Woodbridge Mayor John McCormac did it. Perth Amboy Mayor Wilda Diaz did it. So have hundreds of other politicians, athletes and celebrities. Even our own Everett Merrill did it! And so have many of you.
What is everyone doing?
Getting soaked, thanks to the wildly popular Ice Bucket Challenge, which involves people getting doused with buckets of ice water on video, posting the video to social media, then nominating others to do the same, in an effort to raise ALS awareness. Those who don't take the challenge within 24 hours are asked to make a donation to the ALS charity of their choice. The viral sensation uses the hashtag #IceBucketChallenge.
As of Monday, the ALS Association has received $15.6 million in donations, compared to $1.8 million during the same time period last year (July 29 to Aug. 18). The donations have come from existing donors and 307,598 new donors to the association, according to als.org.
Central Jersey accepts challenge
McCormac challenged two colleagues — Diaz and Edison Mayor Tom Lankey — along with Avenel resident and high school student Tommy Mitch. Along with the ice bucket, McCormac and the Woodbridge Community Charity Fund donated $1,000 to ALS. Township employees also accepted the challenge, contributing more than $200 via individual $5 donations good for "Dress Down" Friday.
"The Ice Bucket Challenge is a unique and innovative way to raise awareness, and funding, in the effort to combat and find a cure for Lou Gehrig's disease," McCormac said.
McCormac, in concert with the Mayor's Wellness Campaign, has participated in the annual Woodbridge "Walk to Defeat ALS" as part of the ALS Association's national program to promote awareness and fundraising. The annual walk, hosted by former Woodbridge resident Abby Anderson, takes place every spring at Alvin P. Williams Memorial Park in the Sewaren section.
SUBMIT:We want your ALS #IceBucketChallenge videos
Since 2001, Abby Anderson has dedicated the Woodbridge ALS Walk to the spirit of her father — Ira Anderson — a lifelong Woodbridge resident and township advocate whose struggle against ALS was marked by courage and dignity, and to his family that carried on his legacy of hope with their fundraising efforts.
Diaz took the challenge Monday.
"In honor of the Velazquez family (a city employee's father) and those families who have experienced a loss or challenge with the disease, I took on this challenge," she said. "This is not just about a multitude of home videos going viral. The message getting across — awareness — is just as important."
Diaz was challenged by McCormac as well as Perth Amboy High School football coach Brad Bishop and the entire team. Diaz then challenged, state Sen. Joseph Vitale, city Recreation Director Kenneth Ortiz and the City Council.
Stockton resident and former Bernardsville Public Library Youth Services Librarian Michaele Casey has had personal, and tragic, experience with the disease.
"I have been amazed and saddened when I speak to people about ALS," said Casey, whose sister, Rosie Myer, died of ALS in 2012. "There are people who have heard of the disease but (are) not totally aware how it affects families, caregivers and most of the all the individual who suffers daily from the symptoms.
"I have been reading with much interest about the Ice Bucket Challenge and I am thrilled with the response. The increased awareness and donations is fantastic! I am impressed by the groups, individuals and the celebrities that have taken the challenge. Family and friends have responded to the challenge and made donations. As one friend tweeted to me, she and her son took the challenge, made a donation and then read a book about Lou Gehrig!"
Paulette Crabiel Wahler of Piscataway participated in the challenge with family members and friends, and submitted a video.
"My brother challenged me and I challenged my friend," said Crabiel Wahler, who owns a business in Milltown. "I think it's a wonderful idea whoever came up with the challenge. Everybody's doing it and it's doing nothing but bringing awareness to ALS — and donations."
Natalie Zychlinski, 17, of Dunellen also submitted a video after being challenged by borough resident Jake Tunison, the brains behind the method of dumping in the video. Natalie nominated Jena Panciello, Amanda Meyers and Alex Borowick.
"Natalie wanted to learn about ALS, too, and turned to the Internet to become a little more aware of what the disease involves," said her mother, Diane Zychlinski. "She plans to donate $20 of her own money as well.
"On Natalie's video, she encouraged people to read/learn about ALS. She didn't want this just to be a stunt. She wanted to have others learn about it, as well."
Our own Everett Merrill, crack Web producer and writer, got some help from his son, Steven, 15.
"I was challenged by a neighbor in North Plainfield and was more than happy to get doused with ice water to raise awareness for a debilitating disease," said Merrill, who shared the video. "I challenged three brothers in our town to do the same, and I can report they completed the task."
Public service
Gov. Chris Christie and U.S. Sen. Cory Booker took the challenge, and on Monday, so did state Senate President Steve Sweeney.
Sweeney, who was challenged by state Sen. Kevin O'Toole, then issued challenges to state CWA (Communications Workers of America) Director Hetty Rosenstein, state Building Trades Council President Bill Mullen and Rutgers Board of Governors member Mark Hershhorn. Sweeney, as well as the Majority Office, will make a donation to the ALS Association.
At 10 a.m. Tuesday, Woodbridge Board of Education President Brian Molnar will complete the challenge, which was issued by Amy Skibar of the Port Reading section. The challenge will be completed on the front steps of the Woodbridge Township School District Administration Building, 428 School St.
Making a difference
With only about half of the general public knowledgeable about amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease, the Ice Bucket Challenge is making a big difference. Since July 29, the association has welcomed more than 70,000 new donors, according to als.org. The cause of ALS is not completely understood
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, the website states. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is no cure and only one drug approved by the U.S. Food and Drug Administration (FDA) that modestly extends survival. About 30,000 Americans have the disease.
"Without a doubt, the popularity of the Ice Bucket Challenge, the social media phenomenon that continues to sweep the nation, has encouraged tens of thousands of Americans not only to douse themselves with ice water but also to open their pocketbooks and to donate to the fight against ALS," ALS President and CEO Barbara Newhouse said Saturday. "While the monetary donations are absolutely incredible, the visibility that this disease is getting as a result of the challenge is truly invaluable. Words cannot express how incredibly grateful we are to the tens of thousands of people who have donated to support the fight against ALS. The money and the awareness generated through this effort are truly game-changers in the fight against this disease."
Beverly, Mass., resident Pete Frates, along with his family, helped to make the Ice Bucket Challenge go viral on the social sites Facebook and Twitter, according to als.org. Frates, 29, has lived with ALS since 2012, and he has worked with the ALS Association's Massachusetts Chapter. A former baseball player at Boston College, Frates tirelessly spreads ALS awareness.
Central Jersey is taking the challenge. Are you? Please keep sending us your videos at MyCentralJersey.com/Share.
Assistant Editor/Digital Dave Siminoff: 732-565-7321; dsiminoff@mycentraljersey.com
ALS facts and figures
ALS is not contagious.
It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually.
About 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years or more. More than half of all patients live more than three years after diagnosis.
About 20 percent of people with ALS live five years or more and up to 10 percent will survive more than 10 years and 5 percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
ALS can strike anyone.
The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.
There can be significant costs for medical care, equipment and home health care later in the disease. It is important to be knowledgeable about your health plan coverage and other programs for which you may be eligible, including SSA, Medicare, Medical and Veteran Affairs benefits.
Riluzole, the first treatment to alter the course of ALS, was approved by the FDA in late 1995. This antiglutamate drug was shown scientifically to prolong the life of persons with ALS by at least a few months. More recent studies suggest Riluzole slows the progress of ALS, allowing the patient more time in the higher functioning states when their function is less affected by ALS. Click here for more information on the drug. Many private health plans cover the cost of Riluzole. Further information on Riluzole coverage through Medicare Prescription Drug Benefit can be found in the Advocacy pages of this website.
On social media
To experience the #IceBucketChallenge that's spreading ALS awareness through social media, challenge your friends and family.?
Twitter: http://www.alsa.org/fight-als/ice-bucket-challenge-twitter.html
Facebook: https://www.facebook.com/hashtag/icebucketchallenge
YouTube: https://www.youtube.com/results?search_query=%23icebucketchallenge
Instagram: http://www.alsa.org/fight-als/ice-bucket-challenge-instagram.html
Source: www.alsa.org