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Nancy Frates used her real estate business skills to help her son make the ALS movement a worldwide phenomenon.
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Monday, November 3, 2014
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Graham Wood
With a little smile or the blink of an eye, Pete Frates can still let his mother, Nancy, know that he understands what she’s saying to him. He can’t talk back anymore — he can’t even swallow or hold his head up because of the deterioration of his neck muscles — but when Nancy tells him that she loves him, a wink says “I love you, too.”
The person Pete has become is unlike what anyone imagined, and not just for the obvious reasons. Two-and-a-half years ago, he was an avid baseball player, having played for Boston College when he was in school, and knocking baseballs out of ballparks all over town. Now he’s confined to a wheelchair and using a feeding tube to stay alive. Most might say he was at his best in his glory days as an athlete. But it’s in the present, at nearly 30 years old and without the ability to care for himself, that Pete has inspired the world.
You’ve probably heard Pete’s name before, as his condition has become quite notable. In fact, he’s probably the reason you at least know someone — if you didn’t do it yourself — who has dumped a bucket of ice water on themselves in the name of scientific research.
In March 2012, Pete was diagnosed with amyotrophic lateral sclerosis, a progressive neurodegenerative disease also known as Lou Gehrig’s disease that kills the nerve cells in the brain and spinal cord. Over time, it shuts off the brain’s ability to control muscle function, and as of today, every person suffering from ALS eventually dies prematurely. Since his diagnosis, Pete has been credited as the central driving force behind the Ice Bucket Challenge that has swept social media and inspired millions across the globe to raise awareness of the debilitating disease. It has become a one-of-a-kind movement, a blueprint for future charitable efforts to break the mold in a modern, technological society.
Moving the Ice Bucket Challenge forward toward a global cause is no small feat, particularly for someone with as many limitations as Pete faces. But behind his success is a woman who has applied the motto of the real estate industry — relationships first — to the ALS world, helping Pete boost the groundswell for new research and record-shattering donations: his mother, Nancy, an agent and business-building trainer with Keller Williams Realty in Beverly, Mass.
‘We’re Going to Move the Mountain of This Disease’
Life can change in an instant, Nancy Frates says. A lot of people say that because they know it’s a real possibility. She says it because she’s lived it.
On March 13, 2012, the day Pete was diagnosed, Nancy and her husband, John, were going to meet Pete at the doctor’s office. Pete had gotten hit in the wrist while playing baseball months prior, and it never seemed to heal. This was the day he would finally find out what was going on, and he wanted his parents there for support.
“My husband and I took different cars to the appointment,” Nancy says. “We thought we were going to work separately afterward.”
But when Pete was told he had ALS, everything changed. The family gathered around the table at home to talk about what would happen next. Pete’s bravery in the face of such devastating news astounded them all.
“Pete said, ‘I will have no wallowing and no one being negative about this. We have an opportunity to change things. We’re going to move the mountain of this disease,’” Nancy recalls. “I didn’t have time to wallow. Every day I want to take the easy way out — to wallow and sit in the house and cry all day. But every morning, I choose instead to be a part of this challenge to fight this disease and be proactive, and I follow my son’s lead.”
Every family member took on a role as a part of their team to fight ALS. Some would do research on the disease to find out what was needed in the community to further progress toward a cure; others would reach out to anyone who would listen to build support for financing more research. Nancy immersed herself in both.
“I had to digest the fact that my son had ALS,” Nancy says. “I knew it was bad, and I thought it only happened to old people. I had a friend whose father had it in the ’70s.
“I was told there is no treatment for ALS, and one word popped into my mind: unacceptable,” Nancy continues. “I’m a mama bear, and when you tell me that one of my children has no treatment, I won’t stand for it.”
She soon began meeting with government officials, representatives from the Federal Drug Administration, and CEOs of drug and therapy companies, and she’s been to Capitol Hill to speak about ALS. She now serves on the Board of Trustees for The ALS Association.
As the Frates family ramped up their advocacy for ALS research — they created a Facebook page called Team Frate Train to rally people around their cause — an indispensable tool to spread the word about the disease fell into Pete’s lap: the Ice Bucket Challenge.
Launching a Movement
A man from Yonkers, N.Y., named Pat Quinn found Pete’s website after being diagnosed with ALS himself. Their lives were practically identical: they were both in their late 20s, were athletes in college, and had girlfriends, and Pat was diagnosed in March 2013, nearly one year to the day after Pete. The two quickly bonded, and Pete became a mentor to Pat.
By July of this year, the Ice Bucket Challenge had already been established on a small scale, and Pat had heard about it. Knowing that Pete was part of an extensive network of athletes in Boston — including players from the Red Sox and Celtics — Pat introduced Pete to the movement, hoping his network would bring major visibility to it.
In late July, Pete began encouraging his friends to post their own videos of their Ice Bucket Challenges, and they did so while calling him out as the person to which they dedicated their donations to the ALS Association. The sports world in Boston, wielding the kind of influence it does, got the ball rolling. And from that moment forward is when the Ice Bucket Challenge became a worldwide phenomenon, as the message spread like wildfire across social media. In early August, Pete took his own Ice Bucket Challenge while flanked by friends and Boston College sports figures:
“It just took off when Pete got his network involved,” Nancy says. “The ripple effect is what’s going to mark this and keep this going. It’s lasting because Pete’s story is compelling and relatable.”
There’s no question the Ice Bucket Challenge has gone far and wide and had some very lasting effects on ALS research: It raked in more than $100 million in two months after more than 3 million people made donations, according to estimates.
All the while, Nancy fought behind the scenes as her son became the public face of the movement. She says she used her business skills as a real estate agent to make the right connections in the ALS community and help jumpstart change.
“My husband and I are both business owners,” Nancy says. “We took all those skills as business owners, and we created a brand — Team Frate Train — we created merchandise, and we built relationships to reach our goal. We got people to take it to the next level. We got people to go and research what this disease was, and then they put their money where their mouth is, and now they’re funding new research.”
Keeping Hope Alive
Now, as the attention the Ice Bucket Challenge received begins to subside, Nancy continues to do everything she can to bring awareness to ALS. She still stumps for ALS research anywhere she can, and she still has hope that her son will be saved.
“I see treatment and a cure coming in the future, whether it happens tomorrow or in 20 years,” she says. “All I have is hope and faith. That’s what gets me through the day.”
Nancy will be speaking at the Good Neighbor Awards gala on Saturday at the REALTORS® Conference & Expo in New Orleans. She’ll be speaking about how to deal with challenges when they come into our lives.
“[The GNA gala] is a great platform because these are people who do what we all on this earth should be doing, which is helping the lives of others. It’s my honor to speak to a group who gets that,” Nancy says. “If you live a good life, when a challenge strikes you, you will know how to deal with it.
“I’m acutely aware of the blessings every day. I have a son who knows why he walks the face of the earth. He’s passionate about what he does — what a gift that is. Pete has always been captain of the team. He’s a leader, a mentor, he was president of his class, and he has always been inspiring and very charismatic. He has a work ethic and a mental toughness that would challenge anyone. He’s always used this phrase: ‘Be passionate, be genuine, be hardworking, and don’t be afraid to be great.’ And that’s exactly what we’re doing.”
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Nancy Frates used her real estate business skills to help her son make the ALS movement a worldwide phenomenon.
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Pete Frates, center, was a Boston College baseball phenom before being diagnosed with ALS. Now, he is known for helping the Ice Bucket Challenge reach global success.
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