Frates-family-ice bucket challenge

Frates Family Photo

Interview by: Jacqui Richard

Setting: New Brother’s Deli in Danvers Square

Everyone thinks about it, or tries not to. What if you received a devastating diagnosis…what would you do?

Nancy Frates, is now a very busy woman.  This is the story of the the ALS Ice Bucket Challenge, and how the love of a family created a global movement. Originating in Beverly, Massachusetts in 2012, her family touched over half the globe.  In spite of her hectic schedule, Nancy still had the time to allow me a first hand account of how she, her family, and the “Communities of Pete” got ALS on the map, found a community, and if they have it their way, someday, a cure.

I’m sitting in New Brother’s Deli in Danvers Square as Nancy breezes through the door. Her energy lighting up the room, she is sophisticated, and smiling ear to ear. Having never met me in person before, she greets me with a smile and a hug and we sit down. I ask Nancy to begin with how her family’s world changed instantly after son Pete’s devastating diagnosis of ALS in 2012, and how their love is creating a global movement out of it.

IT’S CLEAR: The Frates’ are a family rooted in love.

Love is at the origin of this story. Our son, Pete was diagnosed with a terrible disease. That would move any family to find the best care, look out for a child’s best interest. What catapulted us to the next level was the devastation of ALS, and our community’s willingness to help us fight this disease.

 

In March 2012, the Frates family was rocked with some of the worst news a family could receive. Pete, dedicated son, brother, father, and husband was diagnosed with ALS. He was given a prognosis of 3-5 years to live, and was told, “Every muscle you have will be taken from you, but your brain will stay intact.” There was no treatment option available, very little information on the disease, and no support system to fall back on. Pete’s diagnosis was described as “sporadic.” No one could tell them why a healthy, 27 year-old man was the unlucky recipient of ALS. This mystery is not uncommon. In fact, after receiving the diagnosis, many people are told to go home and get their affairs in order.”

To put this into perspective, Nancy admits, a diagnosis of spinal cancer would have been preferable to ALS. As Nancy put it, “What kind of world do we live in where I am hoping my son has spinal cancer? But at least with spinal cancer, you have a 5% chance of survival. That’s more than we had for Pete at the time.”

BUILDING MOMENTUM FOR THE ALS COMMUNITY: The Ice Bucket Challenge

The momentum gained from The Ice Bucket Challenge has been “organic in the truest nature of the word.” Within 6 hours of his diagnosis, Pete expressed his vision, “I’m not going to ask why. We’re not looking back. We’re looking forward.” That’s when the family began to seek Plan B—identifying what they could do. Then reality hit. What could they really do? They are smart people, but didn’t have enough time to go back to medical school…so they decided to focus on what they were already good at.

As Nancy put it,

It’s all about mindfulness. It’s all about what you do well. I don’t care about my weakness. I don’t even think about it. I know what I can bring to the table. I know what I do well. That’s what I focus on.

 

In her “previous life,” Nancy trained salespeople. She was an educator. So in order to save her son, she focused her efforts in that direction.

Through their active, ongoing commitments to the communities of Beverly, MA, St. John’s Prep, and Boston College, the Frates family began to spread awareness of the disease, and received an immense outpouring of support.

 

You get what you give,” Nancy says. “From a community, you can’t expect to take all the time, you’ve got to give. If you spread kindness, eventually it will come back to you.

 

After 2.5 years of building momentum and spreading awareness, things began to come full circle. Pete had played baseball at Boston College, his family’s alma mater. After graduation, while working a corporate job, he stayed involved with the college and started a mentorship program through the baseball team. After he was diagnosed with ALS, he began mentoring newly diagnosed ALS patients. His advice to them, “Shout from the highest mountain, tell everyone you know about ALS.” All of a sudden there came these “pockets of young guys building momentum.” One of them was Pat Quinn, a Yonkers, N.Y. native, diagnosed with ALS in 2013, who contacted Pete to get involved to help build awareness in his home region of Westchester, NY. This help launched a wider approach.

While The Ice Bucket Challenge had taken hold in the Boston area, the ultimate challenge was to figure out how to take it national. Little did the family know, it would soon become a global effort. The Ice Bucket Challenge’s origins are unknown. It was going around the Internet for a variety of causes, but it didn’t really take hold until a golfer in Florida named, Chris Kennedy, did the challenge in honor of his cousin in New York, whose husband also has ALS. She posted the challenge to her Facebook, nominated 3 more people, and it started to get noticed. Pat Quinn’s family saw the challenge through mutual friends on Facebook, brought it to Pete and said, “I think we’ve found it.” With the help of Pete’s friend, Phil, at the ALS Association, the strategy came clear.

“Communities of Pete” began blowing up the challenges online, with participation from his friends and teammates from the Prep and BC, as well as the residents of Beverly, MA. Pete was selflessly giving before he needed anything, and now he and his family have seen it come back to them ten-fold, in the form of donations and increased awareness. The Frates family remains humble about their efforts, and as Nancy explains, “Our community made a huge impact in having this effort go the way it went. We could not have done this alone.”

HOPE AND LESSONS LEARNED: Spreading Awareness of ALS

Nancy Frates does not shy away from clichés. At this point in her life, she welcomes anything that allows her to spread awareness about her son’s illness. “You can use clichés every day of the week. You know why they’re called clichés? Because they’re true. Our family lives by these rules: Life changes in a minute, stop and smell the roses, live a good life of gratitude. These are statements we hold dear to our hearts–we practice them every day.”

Through that practice, and global community involvement, the Ice Bucket Challenge continues to raise money for the ALS foundation and medical research. After decades of little progress, because of the extra funding they’ve been able to raise, researchers are taking  more risks. Recently,  a breakthrough at Johns Hopkins isolated a protein in the brain that shows promise of being a gateway to solving this mystery. In addition to the medical advances, there is now greater awareness of ALS patients and their families. Most importantly, there is hope.

 

It’s all about challenges and how you face them. It can be illness, work, or family. Look, it would be very easy for me to pull the covers over my head, stay in bed and cry all day,” Nancy says. “I could absolutely do that. I make a conscious choice to get out of bed every day, go to work, and be positive. If you’re negative, you won’t help the person you want to help the most. You also have to be proactive and productive.” She chimes in another cliché, “This isn’t a dress rehearsal. I feel good about how I spend my time. Whatever I choose to do, I make sure it has to be good for my soul. If it’s good for my soul, I know it’s probably going to help someone else. We all have to search for who we are at our very basic core, and let that be our guide.

 

 

Four years since Pete’s diagnosis, the momentum is still going strong. Research is still active. Nancy again credits the community. “Now we’ve created team Frate Train. That’s our own community now. We have events, fashion shows, Pints for Pete, etc. There’s a reason why we get 1,000 people to attend our events. It’s not just the cause, but also the community of love, fun and joy. The fashion show sells out within three weeks. It’s full of so much energy and love,” she explains.

 

I would say, if you’re someone who’s struggling with a challenge, find a community within that challenge. There are probably others going through the same problem as you are. I’ll go back to a very basic word and one that’s very much always been a part of our family: team. We believe in the greater good of the team as the key to winning the game or whatever it may be. There may not be an “I” in team, but there are lots of individuals that the team will help.

 

NANCY’S WISDOM: Setting Priorities

 

Some of us just get caught up in a lot of things that frankly don’t matter. People worry too much about the money they have in the bank, instead of focusing on being a better person and giving back to others. Those are the things that matter most in this world. It’s important for our children, our grandchildren, to see us live our lives this way. We have to continue the lessons taught by our parents and grandparents. If we can share just a little piece of their beliefs with others, our job is done.” And the Frates’ most definitely have done these things.

 

I ask Nancy, what’s the next step? She answers, “Treatment. I speak often about awareness and keeping the momentum going, keeping ALS on everyone’s minds. I’m on the ALS Association board of trustees. I’m at the table when the ice bucket money is being dispersed. I get to be in conversations around how we are helping ALS patients. Our mission is three-fold: research, patient care, and advocacy. We need to push the FDA so that when treatment comes along it will be approved. ALS chapters are on the ground with loaner closets for newly diagnosed patients. Within a week of diagnosis, patients learn it will cost a quarter million dollars out of pocket when you are in the throes of the disease. Equipment and caregiving is not covered by insurance. If you saw what it takes to care for an ALS patient, every minute, every hour–it takes a village.

 

I’m very proud to be a member of the ALS organization. I’m very involved with top doctors in the world of ALS. I keep pushing them. I take meetings all the time. We get everyone from snake oil salesmen to researchers telling us what they’re doing. It’s a big job to vet through all that information. Once you raise that kind of money, you attract the good, bad, and ugly. People try to take advantage of us, but we stay strong, stick with our convictions and listen to our gut. It has served us well to this point. Now it’s a much more educated gut. There are people working on research for a cure every day.

 

FINAL THOUGHTS: Focus on Progress

The Frates family and the communities they inspired have raised a significant amount of money, allowing breakthroughs to happen and treatments developed. ALS patients now have communities to support them and bring them hope. More students are applying for internships in ALS research and development. Because of the funds raised solely by the Ice Bucket Challenge, scientists are producing more data per hour in today’s research than in all the past years of research combined.

Nancy readily admits that this all started to save her son. She explains,

I’m helping my kid, and if I can help others in the process that makes me feel better. There are always new ways to help others. Focus on what you know, and just go for it.

If you’d like to offer your support to the Frates family, please visit their website PeteFrates.com for upcoming events and ways to donate.

You can also follow Team Frate Train on social media:

Facebook @TeamFrateTrain