Gov to sign ‘Ice Bucket’ bill
A bill that would make the first week of each August “Ice Bucket Challenge Week” in honor of Pete Frates — who started the social media phenomenon that raised hundreds of millions for ALS research — is headed to the governor’s office to become law. The bill has been approved by the House and Senate, and forwarded to Gov. Charlie Baker to sign. “Gov. Baker was pleased to support Pete Frates and his family by hosting the Ice Bucket Challenge at the State House (in August 2015) to raise awareness and resources for those battling ALS, and looks forward to signing this bill soon as a fitting tribute,” Baker’s press secretary, Billy Pitman, said in an email.
Frates, a former captain of the Boston College baseball team, was 27 in March 2012 when he was diagnosed with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, an incurable, progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
In the U.S. alone, more than 6,000 people each year — about 15 per day — are diagnosed with the disease, with an average life expectancy of two to five years from the time of diagnosis, according to the ALS Association.
Rather than giving up, Frates decided in August 2014 to dare people he knew to dump buckets of ice water over their heads, or donate to ALS research and challenge others to do the same.
The idea caught fire on social media as donors videotaped their reactions — cringing, squealing, laughing — as they took the plunge and then dared someone else to be as brave.
The challenge drew famous participants such as Bill Gates and LeBron James and made something of a celebrity of Frates as his idea raised $115 million during a twomonth period alone, according to the ALS Association — even as his own condition deteriorated.
The donations already have reaped benefits, helping to fund a study led by John Landers of the University of Massachusetts Medical School in Worcester. The study identified a new ALS gene, NEK1, which now ranks among the most common genes that contribute to the disease, providing researchers with a new potential target for therapy development.
“Pete was determined from the very beginning to make something positive out of what he was going through,” said state Sen. Joan B. Lovely (D-Beverly), who introduced the bill with state Rep. Jerald A. Parisella (D-Beverly). “It may be too late for a cure for him, but he wanted to save others. And we wanted to make sure we kept his challenge going.”
John Frates said he and his son — a married father himself — are "elated and honored that they would be in our corner for so long.”
“Just as I feel Pete was almost chosen for (starting the challenge),” the elder Frates said, “I also feel that the ice water has some sort of rejuvenating powers and brings us all together for the commonality of good.”