IMSA’s long-time principal pushing research in his courageous battle against ALS
By Denise Crosby || email@example.com September 29, 2012 3:24PM
Former IMSA Principal Eric McLaren works with an in home nurse on some range of motion exercises at his home in Sugar Grove on Wednesday, September 26, 2012. McLaren was diagnosed with ALS in 2010 and has been battling the disease ever since. | Brian Powers~Sun-Times Media
Updated: November 1, 2012 6:45AM
For 13 years, Eric McLaren led the Illinois Math and Science Academy through crisis situations by following a three-point mantra:
Keep the routine the same.
Do not speculate.
Stay in the here and now.
Today, as the former IMSA principal lies in a hospital bed in his Sugar Grove home, dependent on round-the-clock nursing care and machines to eat and breathe, McLaren is using all of the above to manage the biggest crisis of his life.
He’s battling amyotrophic lateral sclerosis (ALS), a motor neuron disorder also known as Lou Gehrig’s disease, that, in the two years since the diagnosis, is gradually robbing him of all muscle control. His only form of communication is to blink with his eyes — one means yes; two for no — and a computer system at the end of his bed that allows him to type out messages of courage and wisdom with his toes.
This disease is awful, he writes. I want it wiped from the Earth, along with M.S., Parkinson’s, Alzheimer’s.
Even as ALS overpowers him, one inch at a time, McLaren is doing all he can to attain that goal. And following his lead are impassioned friends, family, co-workers and researchers — along with an army of brilliant IMSA students, past and present, who are determined to follow their school’s mission statement “to advance the human condition.”
I believe in what IMSA students can do, McLaren spells out on the computer. Already seen amazing things from them.
While he may not be here to witness it himself — 90 percent of all ALS patients die within six years of diagnosis — Dr. Eric McLaren is convinced the battle against this and other brain diseases will be won on a whole new front.
Medicine does not understand the brain, he types out the words slowly. The answer is in the science.
Keep the routine the same
It was in the spring of 2010 that the then 46-year-old IMSA principal noticed the first signs. Cramping. Tremors under the skin. Muscle spasms. Weakness in his arms.
Tests were run. More tests. Then, in August, this statement from the doctor: You either have a pinched nerve or ALS.
An annoyance versus a death sentence. Unlike cancer, there’s no cure for ALS, no medicine that can stave off its ravages. Unlike Alzheimer’s, it leaves the brain fully aware as motor neurons die and can no longer tell the brain to move the body’s muscles.
The day a pinched nerve was ruled out, McLaren and his wife Kim took their three sons — EJ was 12 at the time, Tyler, 11, Cael, 8 — for a run on the prairie path by their home. Kim, struggling with back problems, jumped on her bike and pedaled slowly alongside the family, even as her mind raced.
The kids remember the family run. It was nothing out of the ordinary. Eric chatted with the boys about the new school year. He laughed and smiled and felt the sun on his face, the wind in his hair. The next day, they kept up with their busy schedules. Running the boys to their activities. Swimming. Baseball. Cross Country. Late night dinner. Homework.
McLaren went to work at the school on Sullivan Road on Aurora’s West Side. He called in IMSA’s founding President Stephanie Marshall, along with Vice President for Strategy and Advancement Cathy Veal, his colleagues since the elite, public, residential college prep school opened its doors in 1986. “I’ve got some bad news,” he said.
Veal felt like she’d been punched in the gut, wishing he’d said his diagnosis was cancer so this close friend and colleague would have a fighting chance. They all cried. She and Marshall began processing the news, knowing they had to work through it themselves to help others cope.
Stay in the moment, they thought. How can we find gifts in this situation? Then it hit both of them.
Science. Education. Advocacy. That’s what IMSA is all about.
Do not speculate
Eric McLaren bleeds IMSA. A graduate of West Aurora High School, he earned a psychology degree from North Central College in Naperville and his master’s from Northern Illinois University before IMSA hired him as a residential counselor at the age of 21. He never left.
“Eric doesn’t like change,” laughs Kim, who was also a residential counselor, as well as volleyball coach at IMSA, when she fell in love with her bright, handsome, athletic co-worker.
Marshall saw something special in the young man, as well. He was steady. Consistent. Fair. A quintessential learner and leader who was “wise beyond his years.”
McLaren was named principal in 1999 — two years before, unbeknownst to him, a beautiful theater producer in New York City named Jenifer Estess was beginning to notice twitches and tremors in her body.
Diagnosed with ALS in her mid 30s, Estess was as strong-willed as she was creative. She was not going down without a fight. With the help of her sisters, Valerie and Meredith Estess, she formed Project A.L.S. and called upon her show-biz friends to help turn the organization into New York’s cause célèbre that revolutionized the approach to ALS research. Up until that time, what little work had been done was conducted in a vacuum. The goal of Project A.L.S. was to bring together the greatest minds in the world to tackle this orphan disease from many levels — for they believed, even then, that it would be science, not medicine, responsible for finding a cure.
Jenifer Estess died in 2003 at age 40, but Project A.L.S. pushed forward. In 2008, one of the studies in a lab funded and initiated by the group was named Time magazine’s Most Exciting Breakthrough of the Year. Led by Kevin Eggan of the Harvard Stem Cell Institute and Christopher Henderson of Columbia University, it demonstrated that pluripotent stem (iPS) cells from a patient with ALS can be turned into motor neurons — the very brain cells destroyed by this disease.
It only took a few Google minutes on that September 2010 day for Marshall, now president emeritus for IMSA, to learn all this. A couple days later, she flew to New York City to take part in the Clinton Global Initiative. There, in the front row, she spotted comedian/ actor Ben Stiller, who’d been a dear friend of Jenifer Estess and was now a celebrity face of ALS.
From that encounter, a remarkable partnership was formed between this premiere science school in the Fox Valley and the research group in the Big Apple that has only grown closer in the last two years.
Believe in Project A.L.S., Eric McLaren’s words appear on the giant computer screen that hangs from the wall at the end of his bed. Makes people work together. The answer is in the science.
Stay in the here and now
Speaking calmly and with a smile his students grew to know and love, McLaren introduced that partnership to them in a video before Thanksgiving break in 2010, when he revealed his diagnosis and prognosis ... and challenged them to follow his lead in “living life with purpose.”
Don’t just be good. Be good for something, he told the students. And he looked square into the camera when he declared IMSA kids are capable of finding a cure for this horrible disease.
The following day, he revealed the news to parents — and gradually those close to him were brought into this quiet but passionate army of supporters, including his spiritual community at New England Congregational Church in Aurora, where he was serving as lay leader at the time of his diagnosis.
“If I have to have a disease,” he told the Rev. Gary McCann, “then I want something good to come of it.”
It’s IMSA’s partnership with Project A.L.S. that is allowing him to do just that.
Three months after he was diagnosed, Valerie Estess was keynote speaker for an IMSA assembly. The following June, IMSA hosted ALS Awareness Night, a gala fund-raiser featuring Estess and Harvard’s Dr. Kevin Eggan, who led the research touted by Time magazine. The event brought in over $60,000 for the McLaren Family Research Fund at Project A.L.S. and $20,000 for IMSA’s new Cure A Dreaded Human Ailment (CADHA) fund.
Individually, students picked up the banner, as well, through internships at leading research universities and student-led groups, like Shine On, to raise funds and awareness. Also, IMSA’s Robotics Team designed and built an artificial arm to help their principal feed himself, and the club refocused its mission on creating technology to help improve the human condition.
Students are working on the programming for Prototype 4 for the arm this fall, said head coach Jim Gerry. The team has also launched a project that would enable a wheelchair to lift 10 inches higher so its occupant has more reaching capacity.
“Eric is an amazing human being,” said Gerry. “By sharing his diagnosis, he’s affecting so many people in so many ways.”
But even as the troops rallied behind McLaren and his family, the disease continued its relentless onslaught. By December 2010, when McLaren spoke at the ALS assembly, he admitted having trouble buttoning his shirt and putting on socks. But he also reminded students that each day we awake, we have a choice to have a good day or a bad day. “I choose,” he said, “to have good days.”
Yes, he had to give up running and swimming in November of 2011. Around that same time he also lost his ability to swallow, and could no longer eat real food — like his favorites, cheeseburgers and doughnuts. But he continued to find joy in what he was able to do , including working as IMSA’s leader, more often from his bed.
Then came the big setback.
A diaphragm implant was to make it easier for McLaren to breathe. But during the surgery last January at Case Western University Medical Center in Cleveland — the same doctor performed the procedure on actor Christopher Reeve — one of McLaren’s lungs collapsed. He had no choice but to go on a ventilator.
Later, at Kindred Hospital in Sycamore, a long-term acute-care facility, McLaren developed pneumonia. He was transferred to the Rehabilitation Institute of Chicago, which Kim describes as “an amazing place” that helped stabilize her husband’s condition. After a long three months, he returned home.
But then, with round-the-clock nursing care necessary, the routine changed dramatically. So he continued to concentrate not on what he had lost, but what he still had.
“ I have been blessed,” he writes, “by IMSA. And the community. Our church.”
It’s gratitude Kim shares as well. As her life became foggy with a thousand unknowns, a legion of supporters stepped in to help — physically, emotionally, financially — with the family’s new reality. The McLarens have always been the kind of people who give and give. “It’s hard for them to accept help,” said Patrick Roney, who along with John Plain and Brian Konen formed a local team to run in the New York marathon in November for Project A.L.S.
This support extends far beyond the Fox Valley. Since the diagnosis, Kim said, everywhere they’ve gone they have run into IMSA alums now working in the fields of science and medicine who have offered support. There was a neurologist in Cleveland; a speech pathologist at the Rehabilitation Institute of Chicago; an IMSA dad at Kindred. They even ran into an alum at Hope Children’s Hospital in Oak Lawn, when EJ was diagnosed with Type 1 diabetes while his dad was rehabbing at the Rehabilitation Institute. On one of several family trips to New York for a Project A.L.S. function, McLaren had another setback and spent the entire week in the hospital, where Kim ran into a few more former students.
“IMSA Angels,” she says, “they are everywhere.”
Kim can’t remember. Nor can any of those who know Eric McLaren recall even one time he asked, Why me?
Why spend energy, says the educator, who handed over the leadership role in July, worrying about things out of your control? What good does it do to dwell on your inability to throw a ball to your sons, when you can still use your lower legs to wrestle with them? Why spend time lamenting loss of speech when your IMSA family has helped you figure out a way to communicate with your feet? One of the worst things about the disease, he wrote with that computer, was Losing my arms. Can’t hug my wife and boys. Still, he relishes the fact his oldest son likes to fluff his pillows, straighten his bed; and his middle child enjoys brushing his hair.
Focus on what can do. I can get up and in chair, need help, but can sit up, still can move legs, can work, can be with family.
“Eric is the primary pillar of leadership for the academy who has made international impact,” said Marshall.
“He is an exemplary role model and continues to be so, even as he fights ALS. I am dazzled by his courage.”