Every August Until a Cure: The Frates Mission

BOSTON — As Pete Frates continues his battle with Lou Gehrig's Disease, his mom, Nancy, sat down with me for a powerful, personal conversation.

We covered a lot of territory during our discussion, but the overriding theme was her family's call to everyone in the state of Massachusetts to make this cause their own - this is our disease.

It's so easy for us to think of the Ice Bucket Challenge as a passing fad, something that's just fun to do on the internet. But the fact is, the people of Boston started a revolution. 

That momentum cannot stop. Nancy even points to another indelible moment to motivate us.

Nobody forgets the power of five words uttered by David Ortiz in 2013.

"This is our f***ing city," said Ortiz.

In much the same way, the Frates family wants Bostonians, and people across Massachusetts to feel the same way about ALS - This is our disease.

"Every social media executive I've ever met, be it Facebook, be it Twitter, be it whoever I met with," said Nancy. "They always have this map that shows the Ice Bucket Challenge and there's a big bullseye on Boston, Massachusetts."

A viral sensation does not cure a fatal disease, but it takes steps in the right direction. When key people are involved, unforeseen obstacles suddenly become less daunting.

Politicians like Governor Baker, who's been an active supporter of the fight against ALS, can certainly help, but it's doctors and medical researchers pushing the boundaries of exploration and discovery.

In the two years since the first round of Ice Bucket Challenges, more has been done to unify the cause than ever before. A big player in that effort, aside from the Frates, was Kevin Gosnell, who founded the organization "ALS One." 

"Kevin passed away this week from ALS," said Nancy. "What he did is he put together an organization that he took all the resources located in Massachusetts and got all those people who were operating in silos to come together."

Those most directly affected live the life and fight the fight every day, an excrutiating journey for everyone involved. What we can do is more of the same. 

More donations. More awareness. More donations. More focus on finding a cure.

"Our work is far from done," said Nancy. "We have to continue until we get a treatment for this disease." 

ALS ravages your body, taking its toll slowly, on your motor skills first, and then ultimately, your ability to talk and even breathe on your own.

Nancy Frates recalls vividly the moment that her son, Pete, lost his voice.

"The day that it went away," said Nancy. "I know that he looked at myself and my husband and gave us the look like, 'OK, now keep going.'" 

For all the Ice Bucket Challenges and encouraging breakthroughs, and endless support and recognition of their son, the Frates have watched him deteriorate physically.  They're unable to do anything but make him comfortable and functional and keep that charge moving forward.

"I always have people say to me, 'How can you do what you do?'" said Nancy. "In my world, how can I not do what I'm doing? When we were handed this diagnosis, he's 27 years-old. These are the exact words that were said to us - 'I'm sorry. There's no treatment. There's no cure. This is a 100% fatal disease and up until his death he will be rendered paralyzed, not be able to eat, not be able to move, not be able to breathe, eventually. And the prognosis is this is going to happen within a two to five year period." 

Could you even imagine how you would handle such a diagnosis, and what would you do to turn it into a positive. The Frates determination to make a difference is really palpable and they live the mission every day.

As for Pete, life is a struggle. He's been in and out of the hospital over the last few months for treatment of infections, but all you have to do is follow him on Twitter to understand the fire and energy he brings to this world every day. 

This is our disease and we will fight every August, and every day, until we find a cure.

Cox Media Group