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Head & Heart
This article originally appeared in the Bentley Magazine.
“It was the day that everything changed.” We’ve all had them — phone calls, conversations, moments that set life forever on a different track. Moving forward to any degree requires an act of will. Meet three alumni who turned personal experience with trauma into a mission to change lives for the better.
For Pete's Sake
ANDREW: The day my brother, Pete, was diagnosed with ALS started out like any normal day; we all went to work. I texted him and said, “Good luck today.”
To date there have been more than 14 billion views of Ice Bucket Challenges worldwide on social media.
NANCY: He’d hurt his wrist in an intercity baseball league. We thought, it’s a nerve problem.
JOHN: The night before, I said, “Pete, what are we dealing with here?” He said, “Don’t worry. Just a pinched nerve.” But he’d been online; he had 10 out of the 12 characteristics of ALS patients and, soon, every voluntary muscle in his body was going to disconnect from its nerve ending. He knew full well what was happening, but he was sparing us the awful news for as long as he could.
ANDREW: I raced home when I got the news. Pete sat us down at the dining room table and laid out a plan. Like always, he was leading us toward a goal: Find a cure. We’ve dedicated ourselves to our foundation ever since.
JOHN: That first week of his diagnosis was just devastation upon devastation. We realized ALS wasn’t just underfunded, it wasn’t even at the table.
ANDREW: We started doing events: Wiffle ball, golf tournaments, big friend and family nights — anything to raise a couple thousand dollars here and there. In July 2014, the Ice Bucket Challenge was thrown our way by a friend in New York who had ALS. Once the thing landed in Pete’s hands, it was just like wildfire.
NANCY: Someone I gave an interview to said that Pete was a prophet. He is. This charismatic, gifted young man who set a vision that first night. Since then we’ve tried to educate people about ALS, because the last famous person who had it was another athlete: Lou Gehrig. But that was 70 years ago. Instead of spending an hour at a function telling people about the disease, the Ice Bucket Challenge compelled them to find out about it.
ANDREW: In one of the early appointments with the doctor, Pete asked her exactly how much money it would take to cure this disease. She said, “One billion dollars.”
JOHN: We laughed but, five years later, Pete’s halfway there.
ANDREW: They just moved the goal post to 2 billion dollars, but ...
NANCY: But how can we stop before we fulfill Pete’s promise? Our scope that first night was to save our son, and it’s become so much more.
JOHN: We grieve every day for Pete and it is hard. We don’t judge anybody who just wants to pull the covers over their head, because sometimes we feel like doing that ourselves. But for Pete’s sake, for his wife, Julie, and daughter, Lucy, and for every family facing this disease, we happen to be the face of the disease right now. We want to make sure we’re championing it as best as we possibly can.
TAKING ON ALS
- In May 2017, the FDA approved the first new drug in 22 years that will treat ALS
- The average life expectancy of a person with ALS is two to five years from the time of diagnosis
- The ice bucket that Pete used at Fenway Park is in the Baseball Hall of Fame
- September 5 is officially Pete Frates Day in Boston
Pictured from left, seated: Andrew ’10; Julie, Pete and daughter Lucy; standing: Jennifer (Frates) Mayo and husband Daniel with their daughters, Nancy and John, P ’10.
Meet Andrew and the Frates Family
Finding Strength in Fragile X
Graham Michael Pierce (pictured below right) was born on September 13, 2013, and Reid Francis Pierce was born on June 6, 2015. People used to say, “Wow, those names sound so presidential.” And I’d say, “Who knows? Maybe!”
When you give birth to two beautiful boys, you think the world is going to be unlimited for what they can do.
We will not give up until a cure is found, but we can’t do it alone.Mike Pierce '00, MBA '04
Graham had global development delays from the start. He was originally diagnosed as autistic but was also considered “failure to thrive” and not even on the growth curve. While we dealt with Graham’s delays, we had our second son, Reid. Six months later, we learned Graham had been diagnosed with Fragile X Syndrome. Weeks later came the second blow: Reid was diagnosed with the same genetic disability.
Talk about your world changing on a dime.
Fragile X is the most commonly inherited form of intellectual disability and autism. It’s caused by the mutation of a gene in your DNA, whereby a protein we need for neurological development and brain function is not produced. It causes a cognitive impairment that affects all aspects of development.
There is no cure.
To hear doctors say it’s highly unlikely my boys will ever be able to talk clearly, read, drive a car, go to college, live on their own or ever take care of themselves is crushing. What will life be for my sweet little boys?
I’ve come to terms with the fact that as much as I cry, it does not make it go away. Within five months of their diagnosis, my wife, Kathan, and I formed the Pierce Family Fragile X Foundation, with the intent of funding and accelerating research while creating awareness of this rare genetic disorder. Doctors have studied the gene for so long they believe Fragile X has the ability to be cured with more research — and that's where we come in. Within six months of launching, we raised more than $100,000 and were able to fund three major research grants at Mass. General Hospital, Boston Children’s Hospital and Tufts University.
Kathan and I have worked our whole lives to put ourselves in a position to give Graham and Reid anything they want or need. With a phone call, our lives were devastated. We will not give up until a cure is found, but we can’t do it alone. We say, “It takes a village to find a cure,” because it’s true. And we appreciate everyone who has helped us reach this point.
When I rock my boys to sleep at night, they lay on my shoulders, which is so comforting for both of us. I love having them in my arms, because we are always going to be together.
THE FACTS OF FRAGILE X
- Worldwide, Fragile X Syndrome affects one in 6,000 girls and one in 4,000 boys
- One in every 259 women carry the gen
- The Pierces’ foundation has raised $100,000 so far to fund three major research grants; they hope to double that total in 2018.
Meet Mike and the Pierce Family
To Live Boldly and Free from Fear
I’ve always been a runner — track, cross country and half marathons. For my friend Vanessa (pictured below right), running was a way to ease stress. She loved being outside and really appreciated nature.
We met in fourth grade when I transferred to her school. I was a shy, nervous little girl and Vanessa was one of the first people to introduce herself to me. When we were roommates after college, we started running together in the mornings, even getting up at five a.m. to brave the Boston winters!
Vanessa loved starting the day on a positive note.
On August 7, 2016, Vanessa was in Princeton, Mass., visiting her parents. She went out for a walk — one of her favorite things to do when she was home — and she never came back.
A man assaulted and killed her.
In processing our grief, Vanessa’s family, friends and I have tried to channel her memory and feelings into something more positive: the Vanessa T. Marcotte Foundation. Its goal is empowering women to live boldly and free from the fear of violence.
Helping to run this effort ... is helping me move forward, and she’s still making a difference.Ashley McNiff '11
Digging into the root societal issues that contribute to violence, assault and objectification, we partner with organizations of empowerment and education.
Tutoring Plus, where Vanessa volunteered, runs a program for Cambridge girls and boys that focuses on redefining gender stereotypes. In January, the foundation will host a self-defense and empowerment workshop for more than 500 women at Boston University, Vanessa's alma mater. Roar for Good in Philadelphia has a product, similar to a FitBit, called an Athena. It’s basically a wearable safety device that can sound an alarm if you get in trouble. I look at the Athena and think, this might’ve been the only thing to save Vanessa’s life.
Vanessa and I always talked about starting a company or doing something that would have a social impact. She had this passion for changing the world. We never got there together the way I thought we would. I never thought this would be the focus of our foundation. But in some ways it’s like she’s here every day. Helping to run this effort — everything from setting up our board to event planning and marketing — is helping me move forward, and she’s still making a difference.
A DIFFERENCE OF DEFENSE
- More than 600 women are assaulted in the U.S. every day
- In 2018, 150 girls between the ages of 12 and 18 will participate in gender equality and self-defense programs funded by the Marcotte Foundation and more than 500 women will be impacted
- Vanessa and Ashley once brainstormed about starting a business that would deliver fresh-pressed juice to hospitals
When Brenden Botelho ‘20 and Jonny Boains ‘18 took internships in the Mass. Office of Energy and Environmental Affairs, what was the biggest community problem to tackle? Adapting to climate change.