Pete Frates is the man who helped inspire the social media frenzy, ‘The Ice Bucket Challenge.’ The goal of this challenge was to raise funds and awareness of ALS (amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s Disease). It was a media sensation for a while in 2014 and Pete Frates has been diagnosed in 2012. Now, though, his family is out of money and has been struggling to keep in home care support in place.
A new fund was set up recently by a series of philanthropists to help people like Pete Frates get the care they need at home. At 32, he is quadriplegic and requires constant, around the clock nursing care, which costs about $100 per hour.
As reported by Hilary Shenfeld in the article, Father Who Inspired Ice Bucket Challenge to Get Help Paying for In-Home Care After Flood of Donations, published by People online:
“Pete, who was diagnosed with the debilitating disease in 2012, became a prominent face for the cause when he helped spark the ALS challenge. The 2014 viral social media phenomenon had people around the globe dumping buckets of ice water over their own or others’ heads in a fundraising bid that collected more than $220 million for research, which led to the discovery of a contributory gene.
Meanwhile, Pete’s health continued to deteriorate. Though his mind is fine and he can see and hear, the one-time college baseball player is now a quadriplegic who can’t speak or swallow and can only move parts of his face, Nancy says. He is on a feeding tube and ventilator.”
The family has been paying about $2,400 to $3,000 per day out of pocket for his care, and they essentially drained their savings and everything else they had and were feeling the pressure when this new fund was established. The Massachusetts chapter of the ALS Foundation established the Pete Frates Home Health Initiative with the funds donated by these Boston area philanthropists, and he will be the first beneficiary of them.
The long-term goal will be to expand this fund to all 40 chapters of the organization nationwide. The Ice Bucket Challenge helped to raise more than $220 million for research and to find the contributory gene that causes ALS.
While Pete’s condition continues to deteriorate, his family is grateful for the support they have all received that allows him to remain at home, surrounded by family.
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