The man behind the massively successful ALS Ice Bucket Challenge is facing major financial hurdles in his own fight against ALS.
Pete Frates lies on life support in the bedroom of his house with his care costing somewhere between $85,000 and $95,000 every month, his family says.
The family told CNN affiliate WBZ they are overwhelmed.
“Any family would be broke because of this,” Frates’ father, John, told the affiliate.
A simple idea
Frates is a former Boston College baseball player who has suffered from ALS, or Lou Gehrig’s disease, since 2012.
In 2014, he thought of an idea to raise money for the degenerative disease and ran it by a few friends.
It was simple: Dump a bucket of ice-cold water over your head, then challenge a friend, or friends, to either do the same or donate money to the The ALS Association. Make a video of the whole thing and post it to your social media accounts.
It caught fire in a way no one imagined.
That summer, nothing rivaled the Ice Bucket Challenge in its ubiquity. More than 17 million people dumped ice water over their heads and dared their friends to do the same. Celebrities from Bill Gates to Oprah Winfrey took part.
Money poured in to The ALS Association. In eight weeks, it raised more than $115 million.
“We have never seen anything like this in the history of the disease,” the association said at the time.
A lasting impact
There was an ever bigger payoff.
The ALS Association announced last year the donations helped researchers ID a gene responsible for the degenerative disease.
People with ALS (amyotrophic lateral sclerosis) lose control of muscle movement, eventually losing their ability to eat, speak, walk and, ultimately, breathe.
Right now, there’s only one FDA-approved drug for ALS and it only extends survival by several months.
But earlier this month, the FDA approved the first new drug in more than 20 years to treat ALS. It will be available in the US in August.
The mounting cost of care
As Frates lays in his room, his wife and 2-year-old daughter gives him the will to keep fighting, the affiliate reported.
Despite the costs, which have reached $3,000 per day, his wife says moving Pete to a facility is not an option. It’s important that he spend time with their little girl.
“Pete’s life would be over,” Julie Frates told WBZ.
The family is now reaching out for help.
To help Pete and others with the high cost of home care, the Frates family teamed up with philanthropist Rob Griffin to develop a new fund through The ALS Association – the Home Health Care Initiative. The fund’s first goal is to reach $1 million.
CNN was unable to reach Frates’ family or the ALS Association.
A fundraiser will be held in Frates’ honor on June 5. For more information on the ALS Association’s Home Health Care Initiative, find more information here.