Over eight weeks in 2014, the Ice Bucket Challenge raised $115 million, according to the ALS Association. Most of the money went toward research. It even helped scientists discover a new gene that contributes to the disease.

But donations waned as enthusiasm for the challenge faded.

“I wish we would see more of a residual [effect], honestly,” said Kris Moussette, who chairs the board of the ALS Association of Massachusetts. “There was a short time frame where there was heightened awareness and a lot of excitement and a lot of donations.”

As Frates’s health inevitably worsened in recent years, he and his family turned their fundraising focus toward caring for patients with advanced ALS.

In an online video for the Frates Family Foundation, which earned nonprofit status in May, Frates’s mother, Nancy, says, “The care is just overwhelming. Care versus cure is a debate that we have all the time in the ALS world because the cure is probably going to be for those soon to be diagnosed. The care is for people who are living today with the disease.”

Frates spoke openly about the demands his care placed on loved ones — especially his wife, Julie, who now must raise their young daughter without him.

Through his family’s foundation, part of Frates’s legacy will be helping to ease the burden on other families by paying for medical equipment, home health aides and similar expenses.