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Ice bucket inspiration fighting back

DIFFICULT FEW MONTHS:ALS is still finding new ways to attack Pete Frates, said his father, John, but ‘it’s amazing he’s tolerating all of it. It just shows the courage’

AP, BEVERLY, Massachusetts

Massachusetts Governor Charlie Baker, right center, participates in the Ice Bucket Challenge with its inspiration, Pete Frates, seated center, in Boston on Aug. 10, 2015.

Photo: AP

Pete Frates was mistakenly written off as dead this summer. Turns out, the man who helped spark the ice bucket challenge that raised millions of dollars for research on Lou Gehrig’s disease has not gone anywhere yet.

Frates is fighting back from a summer health scare that landed him in the hospital while still trying to be a public face of amyotrophic lateral sclerosis (ALS), a degenerative disease that destroys nerve cells, impairs physical functions and so far has no cure.

The former Boston College baseball star, who can no longer speak or move, spent most of July in the hospital battling pneumonia and other infections.

In July, a tweet erroneously reporting his demise led to worldwide headlines.

Frates wryly countered by posting a short video of himself lying in a hospital bed with Pearl Jam’s Alive playing in the background.

Using a computer system that lets him type out words through eye movements, Frates has been tweeting about his progress to his nearly 30,000 followers, along with regular musings about his family and friends, living with ALS and Boston sports.

In the weeks since his July health scare, the 32-year-old has re-emerged to accept honors and accolades across his home state of Massachusetts.

Last month, he joined Boston Mayor Marty Walsh, Red Sox officials and the Boston College baseball team on the steps of City Hall to declare Sept. 5 “Pete Frates Day” in Boston, while former Red Sox slugger David Ortiz and other Boston sports legends feted Frates at Fenway Park to mark the release of a new book on his life, The Ice Bucket Challenge: Pete Frates and the Fight Against ALS.

Half the proceeds benefit Frates and his family.

Frates’ wife, Julie, said it has been a difficult and busy few months, but she could not persuade her husband to slow things down even if she wanted to.

“He’s the one pushing to be out there,” she said. “We take all the lead from him.”

The ice bucket challenge had been around for almost a year to benefit various causes, but Pete Frates is credited with helping focus it on ALS specifically.

The challenge raised roughly US$220 million in 2014, of which US$115 million went to the ALS Association. A sequel campaign the next summer raised just over US$1 million, according to the association.

“New, exciting research is just starting to pan out and that’s drawing new talent to ALS research, and a lot of companies are now interested in ALS,” said Nazem Atassi, a Massachusetts General Hospital neurologist whose ALS research benefited from ice bucket challenge money. “It’s the perfect environment for drug discovery.”

Among the most promising developments to come out of research funded by the challenge has been the identification of at least four genes that contribute to the disease, a critical step toward developing new treatments, Harvard University professor Kevin Eggan said.

Another development that gives the Frates family hope is Radicava, a drug approved in May by the US Food and Drug Administration following testimony from Pete Frates and other advocates. It is the first new treatment approved specifically for ALS in 22 years.

Pete Frates’ mother, Nancy, said the family are applying to get her son on the drug, even though it is not clear how it might help, given his advanced condition.

“You just want it to stop,” Nancy Frates said. “You want someone to say this disease is not tearing through your loved one’s body anymore.”

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