In 2006 the president and founder of NextStep Fitness, Janne Kouri, was told he would never walk again. In 2009 he was able to walk across his paralysis recovery center with the assistance of a walker. In 2012 he was able to stand on his own and slow dance with his wife, Susan—a moment they weren’t able to share on their wedding day.
For someone who was told rehabilitation wasn’t an option, these are monumental steps toward recovery. But they didn’t just happen. They required countless hours of dedication and hard work, the willpower to stay positive and an outright refusal to give up hope.
Still, a fierce determination and strong spirit aren’t always enough. Having access to a progressive rehabilitation center has played a crucial role in Janne’s recovery. Unfortunately, these types of facilities are only available to a small percentage of Americans living with paralysis. But Janne is working to change that.
A celebrated athlete, Janne played college football at Georgetown University. His accolades include being named the Most Valuable Player, an All-American title and the 1996 MAAC Defensive Player of the Year award. In 2018 he was inducted into the Georgetown University Athletic Hall of Fame.
On the day of his accident, Janne was competing in a beach volleyball tournament. In an effort to cool down, he dove into the waves and hit his head on a sandbar. The hit fractured his C5 and C6 vertebrae—leaving Janne instantly paralyzed from the neck down.
He spent two months in the ICU at Cedars-Sinai. A single moment had changed the trajectory of his life. There was little time to dwell on the impact of his initial injury, however. Janne had to focus his energy on how and where he’d begin his recovery.
With an abundance of support from those around him—traveling and researching facilities—as well as the financial ability to absorb the expense of long-term care, Janne was already navigating his next steps with an advantage. Still, he found himself moving 2,000 miles away from home in order to receive the treatment he needed.
“When we started researching where I was going to do my rehab, we soon came to find out there were no progressive hospital-based rehab centers in the state of California,” Janne says. “That was extremely eye-opening. California was the seventh largest economy in the world; how do we not have a state-of-the-art progressive rehab center here?”
Putting their lives on hold, Janne and Susan headed to the Frazier Rehab Institute in Louisville, Kentucky. “The only reason I was able to go to the Frazier Rehab and do my rehab under the best researcher in the world, Dr. Susan Harkema, is because I had very good insurance and the financial means to do it,” Janne points out. “At that moment we started thinking, ‘What are other people doing, who are getting injured? How are they getting access to this kind of therapy?’”
“There are 6 million people living with paralysis in this country, and roughly 99% of them don’t have access to progressive rehab and continuum care.”
These questions stayed with Janne, and while he worked hard toward his own recovery he began researching how other Americans were coping with limited resources. “There are 6 million people living with paralysis in this country, and roughly 99% of them don’t have access to progressive rehab and continuum care,” he points out. “I realized how fortunate I was. That’s really where the idea for NextStep came from.”
The goal was to create a community-based paralysis recovery center that offered what the best hospital-based rehab centers had and make it accessible and affordable to everyone. Together with Susan, his sister-in-law Tracy, and in partnership with the Christopher & Dana Reeve Foundation, Janne opened the doors of NextStep Los Angeles a decade ago.
Through a partnership with the NeuroRecovery Network, NextStep is associated with the five best hospital-based rehab centers in the country. They serve the needs of clients recovering from spinal cord injuries, strokes, traumatic brain injuries, multiple sclerosis, cerebral palsy, Parkinson’s and other neurological conditions. Today there are seven NextStep centers in the United States with locations in Los Angeles, Atlanta, Orlando, Kansas City, Raleigh, Phoenix and Las Vegas.
“We started expansion about three years ago. That was our goal from day one, because we knew there were very limited resources around the entire country,” Janne says. “The problem right now in the United States is insurance only covers, on average, 36 days of hospital-based rehab. Then you’re sent home without access to anything for the rest of your life.”
NextStep offers an alternative. “So when your insurance drops you, you could still have access to the best rehab and fitness but in your own community,” Janne explains.
The lack of access to rehabilitation treatments not only stunts the recovery process for those living with paralysis, it increases the likelihood of future complications.
“One of the best parts of the trip was all the amazing people we met on the side of the road, in motel parking lots and in the coffee shops and restaurants.”
“Without access to rehab and fitness, there’s a very good likelihood that somebody with neurological conditions is going to suffer from life-threatening secondary complications,” Janne notes. “If you’re living with a spinal cord injury, for example, that leads to poor circulation, weak bones and poor blood pressure—all of which can lead to a lot of really serious illnesses.”
He argues that if insurance companies began supporting long-term care for those living with paralysis, they would not only provide a greater chance of recovery and higher quality of life, they would reduce cost.
“NextStep is reducing the amount of medication our clients need,” he explains. “They have fewer hospital and doctor visits, fewer cases of pressure sores and diabetes. They need less medical equipment because the more people recover, the more independent they become.”
Operating as a nonprofit, NextStep subsidizes 70% of their memberships through fundraising efforts. Yearly benefits are held here in the South Bay, as well as New York, Washington D.C. and Chicago. Janne and his team rely on crowdfunding and grants, as well as individual and corporate sponsorships. Through the NextStep 365 program, supporters can invest $1 per day for the cause.
But it was the 2019 L.A. to D.C. “Ride for Paralysis” that was perhaps Janne’s most ambitious fundraising achievement. In an effort to raise awareness, Janne traveled 3,100 miles from Manhattan Beach, California, to Washington D.C. on a powered wheelchair.
Averaging roughly 60 miles a day, he hit the road with his friend Anderson Bell beside him on his bike, adventure documentary filmmaker Nic Good, aka “Moose,” and Janne’s nurse, Nina Prosser.
“One of the best parts of the trip was all the amazing people we met on the side of the road, in motel parking lots and in the coffee shops and restaurants,” Janne says. “Everybody was just so kind and generous and really fascinated by what we were doing.”
In addition to the impact they were making through chance encounters, Janne and his team held events along the way. Janne threw out the first pitch for the Reds-Royals game in Arizona, humorously adding that he then got hit in the head by a home run ball in the ninth inning. He gave out the ball at half-court during the Oklahoma City Thunder game.
They held a charity concert in Nashville and spoke to the physical therapy and occupational therapy students at the University of Tennessee. They partnered with the Wounded Warrior Project and the United Spinal Association, giving grants and wheelchairs to wounded veterans and other individuals in need.
“Permobil was one of our amazing sponsors. Following my ride for paralysis, Permobil generously allowed me to donate two Permobil F5s,” Janne notes. “The Permobil F5 is the wheelchair I ride on a day-to-day basis. The functionality of the chair is an absolute game changer.”
After crossing the finish line at George-town University, Janne donated one of the F5s to former Georgetown football player Ty Williams. “Ty broke his neck in the first game of his sophomore season three years ago. His positive attitude, dedication to his recovery and determination is truly admirable. I was thrilled to provide him with a chair that will give him the opportunity to stand and sit eye to eye with people for the first time.”
Janne completed his L.A. to D.C. ride on May 15 and only a few short days later was sharing his excitement over another Permobil F5 donation. “We’re donating a chair to my friend Henry Queen in Manhattan Beach,” Janne says.
Henry injured himself 40 years ago and has been using the same outdated chair for 15 years. With features that allow him to lift his seat, tilt his positioning to relieve pressure and fully recline, “this new chair will be a life-changer for him,” Janne explains.
Every step toward improving the quality of life for someone living with paralysis is a huge win. “This past week one of our clients, Frank Lin, was able to start walking with a walker by himself for the first time,” Janne says. “He’s been coming here for, I believe, six or seven years. It’s just amazing. He works extremely hard, you know; these miracles don’t just happen.”
The average NextStep client comes in about three days a week for about two hours a day. Some are there all day, every day. “We give people access to the facility as much as they want to be here,” Janne says.
He shares that the age of those seeking therapy varies greatly. “Paralysis doesn’t discriminate. We have had clients who are 3 years old and 80 years old.”
Along with their goals to expand here in the United States, NextStep has opened their first international location in Kiev, Ukraine, and will be opening a facility in New Zealand later this year. The community is growing, and that provides more than just physical healing. It provides emotional support.
“When you come in here, it’s such a positive and uplifting environment,” Janne says. “It’s also really motivational. Let’s say for the past 10 years you really haven’t been doing anything, but you come in here and you see people are going back to work and going back to school and starting families. It motivates you to do the same thing.”
Inspiring young adults to fight for what they believe in.