ALS sufferer who inspired the Ice Bucket Challenge is struggling to afford $90,000-a-MONTH medical costs, family reveals - and he may have to go into a care home

  • Pete Frates, 32, was diagnosed with amyotrophic lateral sclerosis in 2012
  • The disease requires round-the-clock care as sufferers lose all physical abilities
  • Frates inspired the Ice Bucket Challenge in 2014, which took off worldwide and raised so much money for research that scientists discovered a crucial ALS gene
  • His parents and wife vowed to care for the former baseball player forever
  • But now they reveal they are struggling to cope with the $90,000 monthly costs 

The man who inspired the Ice Bucket Challenge which raised millions of dollars for ALS research is struggling to pay for his own treatment, his family has revealed.

In an emotional interview, Pete Frates's father - who vowed to care for Pete throughout his illness - admitted the $90,000-a-month medical bills are becoming untenable.

Without support from insurance, they may have to place him in care.

'After 2.5 years of this type of expense, it's become absolutely unsustainable for us,' John Frates told WBZ-TV. 'We can't afford it.'

Pete's wife Julie, mother of his two-year-old daughter, added: 'We just want to keep him at home with his family.' 

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Pete Frates, 32, (pictured) was diagnosed with amyotrophic lateral sclerosis in 2012. He inspired the Ice Bucket Challenge in 2014, which took off worldwide and raised so much money for research that scientists discovered a crucial ALS gene

Pete Frates, 32, (pictured) was diagnosed with amyotrophic lateral sclerosis in 2012. He inspired the Ice Bucket Challenge in 2014, which took off worldwide and raised so much money for research that scientists discovered a crucial ALS gene

The former baseball player pictured here with wife Julie and their two-year-old daughter Lucy

The former baseball player pictured here with wife Julie and their two-year-old daughter Lucy

Frates's wife Julie (left) and father John (right) vowed to care for him until the end. But they revealed to WBZ-TV that the $90,000-a-month costs are crippling their finances

Frates's wife Julie (left) and father John (right) vowed to care for him until the end. But they revealed to WBZ-TV that the $90,000-a-month costs are crippling their finances

The situation has inspired the ALS Association to launch the Home Health Care Initiative to help Frates and other families struggling to cope with home care costs.

They aim to raise $1 million, starting with a fundraiser near Frates's home in Boston next month. 

Frates, the former Boston College baseball captain who touched off the viral-video craze, was diagnosed with the disease in 2012. It's also known as amyotrophic lateral sclerosis. 

The ice bucket challenge raised more than $220 million when it took off worldwide on social media in 2014. 

In the videos, scores of people dumped buckets of ice water over their heads and then nominated others to do the same — or else donate money to ALS research. 

Many did both. 

According to the ALS Association, the videos led to $115 million in donations in 2014 alone. The challenge has been revived every summer since. 

In fact, the challenge raised  which has helped scientists to identify a new gene -NEK1 - which we now know to be one of the most common contributors to the disease. 

Boston Red Sox pitcher Terry Doyle helps his former college teammate Pete Frates as he presents the game ball to manager John Farrell before Boston College play the Red Sox in 2013

Boston Red Sox pitcher Terry Doyle helps his former college teammate Pete Frates as he presents the game ball to manager John Farrell before Boston College play the Red Sox in 2013

The findings from Project MinE - a study of more than 15,000 people with ALS - provides scientists with another potential target for therapy development.

The ALS Association announced funding for the research in October 2014 – after the craze died down.

Lead researcher Dr John Landers, from the University of Massachusetts, said: 'Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery.

'It is a prime example of the success that can come from the combined efforts of so many people, all dedicated to finding the causes of ALS.

'This kind of collaborative study is, more and more, where the field is headed.'

Hollywood superstar Will Smith also took part in the viral campaign which helped to raise awareness for the condition - as well as $100 million (£76m)

Hollywood superstar Will Smith also took part in the viral campaign which helped to raise awareness for the condition - as well as $100 million (£76m)

English model and actress Rosie Huntington-Whiteley had icy water poured over her head
Victoria Beckham's children gave her the same treatment in an attempt to raise awareness for the condition

English model and actress Rosie Huntington-Whiteley had icy water poured over her head while Victoria Beckham's children gave her the same treatment

Formula One driver Lewis Hamilton also took part as Mercedes staff helped to tip freezing water over him

Formula One driver Lewis Hamilton also took part as Mercedes staff helped to tip freezing water over him

Lucie Bruijn, chief scientist for The ALS Association, said: 'The discovery of NEK1 highlights the value of ‘big data’ in ALS research.

'The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available.

'The ALS Ice Bucket Challenge enabled The ALS Association to invest in Project MinE’s work to create large biorepositories of ALS biosamples that are designed to allow exactly this kind of research and to produce exactly this kind of result.' 

  • For more information about the Frates family's fundraiser event, visit their website 

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