http://www.raredr.com/news/ice-bucket-challenge-week
Massachusetts Bill to Acknowledge "Ice Bucket Challenge Week"

Mathew Shanley

Hard as it may be to believe, this August marks the third anniversary of the “Ice Bucket Challenge” taking the internet by storm.
 
Through the viral phenomenon, its founder, amyotrophic lateral sclerosis (ALS) patient Pete Frates, has raised more than $75 million for awareness of his rare disease. Still, his local state representatives don’t think that the job is quite complete.
 
Per the Boston Herald, Massachusetts state rep. Jerald A. Parisella (D-Beverly) introduced a bill with state Sen. Joan B. Lovely (D-Beverly) to honor Frates’ courage by dedicating an annual week in August as “Ice Bucket Challenge Week.”
 
ALS is a classic motor neuron disease, and often called “Lou Gehrig’s Disease” because of how uncommon it was at the time of the former New York Yankee’s diagnosis. Muscle weakness or stiffness are early symptoms, but as the condition progresses, the patient typically loses the abilities to move, speak, swallow, and breathe.
 
Like Gehrig, Frates was also a baseball player. The former outfielder and captain of the Boston College Golden Eagles was diagnosed with ALS in March 2012. Two years later, he started the challenge.
 
“They took what is a very difficult circumstance and made a positive impact on so many people. And there is hope for future victims of ALS that there could be some sort of treatment,” Parisella said. “The courage Pete Frates has shown — I thought it was important to keep that courage alive for future generations.”
 
William Pitman, a spokesperson for Massachusetts Governor Charlie Baker, said via email that Baker would happily sign the bill once it reaches his desk.
 
“Gov. Baker was pleased to support Pete Frates and his family by hosting the Ice Bucket Challenge at the State House to raise awareness and resources for those battling ALS, and looks forward to seeing this bill reach his desk as a fitting tribute,” said Pitman.
 
Baker was among the public figures to participate when he took the challenge in 2014, and again in 2015. Other household names that have contributed include former WWE superstar and action star Dwayne “The Rock” Johnson, afternoon talk show host Ellen DeGeneres, and Rare Disease Report’s own Jim Radke.
 
Earlier this month, the ALS Association announced the establishment of the Pete Frates Home Health Initiative, which will aim to financially assist between 3 and 5 ALS patients each year, as well as an annual $1 million donation to Frates’ medical bills.
 
For updates on Frates, the Ice Bucket Challenge, and other ALS awareness efforts, follow Rare Disease Report on Facebook and Twitter.
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