BOSTON - AUGUST 14: Photos of Pete Frates, former Boston College baseball captain who has ALS and is behind the ice bucket challenge that has gone viral. (Photo by Barry Chin/The Boston Globe via Getty Images)
PHOTO: Barry Chin/The Boston Globe/Getty Images
BOSTON - AUGUST 14: Photos of Pete Frates, former Boston College baseball captain who has ALS and is behind the ice bucket challenge that has gone viral. (Photo by Barry Chin/The Boston Globe via Getty Images)
Now playing
00:53
Ice Bucket Challenge creator struggles with bills
PHOTO: CBS Evening News with Norah O'Donnell
Now playing
02:14
Governor Cuomo accuser Charlotte Bennett speaks out
In this Dec. 1, 2020 file photo, Chairman of the Federal Reserve Jerome Powell appears before the Senate Banking Committee on Capitol Hill in Washington.  Powell told Congress on Wednesday, Feb. 24, 2021,  that the central bank will not begin raising interest rates until the Fed believes it has reached its goals on maximum employment  and warned that many people in the hardest hit industries will likely need to find different jobs.  (AP Photo/Susan Walsh, Pool, File)
PHOTO: Susan Walsh/AP
In this Dec. 1, 2020 file photo, Chairman of the Federal Reserve Jerome Powell appears before the Senate Banking Committee on Capitol Hill in Washington. Powell told Congress on Wednesday, Feb. 24, 2021, that the central bank will not begin raising interest rates until the Fed believes it has reached its goals on maximum employment and warned that many people in the hardest hit industries will likely need to find different jobs. (AP Photo/Susan Walsh, Pool, File)
Now playing
02:18
Jerome Powell: US economy 'some time' away from full recovery
A customer wears a face mask while shopping for flowers displayed for sale from a wholesale merchant ahead of the Valentine's Day holiday at the Southern California Flower Market on February 12, 2021 in Los Angeles, California. - While some florists note an increased demand for socially distant gifts, the Covid-19 pandemic has impacted global supply chains and shut down most large events including weddings where flowers are popular. The Valentine's Day and Mother's Day holidays are historically the two busiest days of the year for floral businesses. (Photo by Patrick T. FALLON / AFP) (Photo by PATRICK T. FALLON/AFP via Getty Images)
PHOTO: Patrick T. Fallon/AFP
A customer wears a face mask while shopping for flowers displayed for sale from a wholesale merchant ahead of the Valentine's Day holiday at the Southern California Flower Market on February 12, 2021 in Los Angeles, California. - While some florists note an increased demand for socially distant gifts, the Covid-19 pandemic has impacted global supply chains and shut down most large events including weddings where flowers are popular. The Valentine's Day and Mother's Day holidays are historically the two busiest days of the year for floral businesses. (Photo by Patrick T. FALLON / AFP) (Photo by PATRICK T. FALLON/AFP via Getty Images)
Now playing
02:39
States rolling back Covid-19 safety measures as cases continue to rise
PHOTO: CBS' 60 Minutes+/Getty Images
Now playing
01:45
'QAnon Shaman' says he has one regret about January 6
psaki
PHOTO: CNN
psaki
Now playing
00:56
Psaki fires back at Trump testing czar over vaccine claims
Now playing
02:30
Alabama governor explains why she's ending mask mandate
PHOTO: CNN
Now playing
01:35
See what security looks like outside US Capitol
PHOTO: Getty Images/CNN
Now playing
02:18
Bash: This is why key GOP senator is fighting Biden's stimulus
PHOTO: YouTube/Everyday Astronaut
Now playing
01:19
Watch SpaceX Mars prototype rocket nail landing, explode on pad
WASHINGTON, DC - JANUARY 16:  Physician to U.S. President Donald Trump Dr. Ronny Jackson listens during the daily White House press briefing at the James Brady Press Briefing Room of the White House January 16, 2018 in Washington, DC. Dr. Jackson discussed the details of President TrumpÕs physical check-up from last week.  (Photo by Alex Wong/Getty Images)
PHOTO: Alex Wong/Getty Images
WASHINGTON, DC - JANUARY 16: Physician to U.S. President Donald Trump Dr. Ronny Jackson listens during the daily White House press briefing at the James Brady Press Briefing Room of the White House January 16, 2018 in Washington, DC. Dr. Jackson discussed the details of President TrumpÕs physical check-up from last week. (Photo by Alex Wong/Getty Images)
Now playing
03:14
DOD releases scathing review of former White House physician
PHOTO: CNN/Getty
Now playing
02:10
'Highly misleading at best': Dale reacts to Pence's op-ed
PHOTO: Gov. Cuomo's office
Now playing
03:35
Gov. Andrew Cuomo addresses women's allegations
Commanding General District of Columbia National Guard Major General William J. Walker testifies before the Senate Homeland Security and Governmental Affairs/Rules and Administration hearing to examine the January 6, 2021 attack on the US Capitol on Capitol Hill on March 3, 2021 in Washington, DC. (Photo by Greg Nash / POOL / AFP) (Photo by GREG NASH/POOL/AFP via Getty Images)
PHOTO: GREG NASH/POOL/AFP via Getty Images
Commanding General District of Columbia National Guard Major General William J. Walker testifies before the Senate Homeland Security and Governmental Affairs/Rules and Administration hearing to examine the January 6, 2021 attack on the US Capitol on Capitol Hill on March 3, 2021 in Washington, DC. (Photo by Greg Nash / POOL / AFP) (Photo by GREG NASH/POOL/AFP via Getty Images)
Now playing
03:01
DC National Guard commander: 'Unusual' Pentagon restrictions slowed response to Capitol riot
Supporters of President Donald Trump hold up their phones with messages referring to the QAnon conspiracy theory at a campaign rally at Las Vegas Convention Center on February 21, 2020 in Las Vegas, Nevada.
PHOTO: Mario Tama/Getty Images
Supporters of President Donald Trump hold up their phones with messages referring to the QAnon conspiracy theory at a campaign rally at Las Vegas Convention Center on February 21, 2020 in Las Vegas, Nevada.
Now playing
03:00
Hear why QAnon supporters believe Trump will be president on March 4th
FBI Director Christopher Wray testifies before the Senate Judiciary Committee on the January 6th insurrection, in the Hart Senate Office Building on Capitol Hill in Washington, DC on March 2, 2021. (Photo by MANDEL NGAN / POOL / AFP) (Photo by MANDEL NGAN/POOL/AFP via Getty Images)
PHOTO: MANDEL NGAN/POOL/AFP via Getty Images
FBI Director Christopher Wray testifies before the Senate Judiciary Committee on the January 6th insurrection, in the Hart Senate Office Building on Capitol Hill in Washington, DC on March 2, 2021. (Photo by MANDEL NGAN / POOL / AFP) (Photo by MANDEL NGAN/POOL/AFP via Getty Images)
Now playing
02:55
Watch FBI director debunk conspiracy theories pushed by Trump supporters
WASHINGTON, DC - FEBRUARY 10: Neera Tanden, nominee for Director of the Office of Management and Budget (OMB), testifies at her confirmation hearing before the Senate Budget Committee on February 10, 2021 at the U.S. Capitol in Washington, DC. Tanden helped found the Center for American Progress, a policy research and advocacy organization and has held senior advisory positions in Democratic politics since the Clinton administration. (Photo by Anna Moneymaker-Pool/Getty Images)
PHOTO: Anna Moneymaker-Pool/Getty Images
WASHINGTON, DC - FEBRUARY 10: Neera Tanden, nominee for Director of the Office of Management and Budget (OMB), testifies at her confirmation hearing before the Senate Budget Committee on February 10, 2021 at the U.S. Capitol in Washington, DC. Tanden helped found the Center for American Progress, a policy research and advocacy organization and has held senior advisory positions in Democratic politics since the Clinton administration. (Photo by Anna Moneymaker-Pool/Getty Images)
Now playing
01:33
Neera Tanden releases statement on pulling her nomination
(CNN) —  

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.

01:42 - Source: CNN
Your ALS Ice Bucket money goes to ... (2015)

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.