Browns linebacker Scott Fujita teams up with University Hospitals staff members Mary Jo Elmo and Dr. Raymond Onders up to aid ALS-stricken football player Steve Gleason, who was a teammate of Fujita on the New Orleans Saints.
Mary Jo Elmo was driving her Subaru Outback home from work 10 months ago, listening to sports talk radio when her curiosity and Scott Fujita's advocacy intersected somewhere on the road to Lyndhurst.
Elmo, a lifelong Browns fan and University Hospitals nurse practitioner, heard the hosts discussing a Super Bowl pregame feature NBC had aired on former New Orleans Saints special teams ace Steve Gleason. A year earlier, he had been diagnosed with amyotrophic lateral sclerosis (ALS), a terminal disease that erodes the nerves controlling voluntary muscle movement and leads to paralysis. The hosts mentioned Gleason was a good friend of Fujita, the Browns linebacker who had done countless interviews promoting the fight against ALS, also known as Lou Gehrig's disease.
Fujita had become one of Elmo's favorite players in part because she considers him so well spoken. And, also really cute. In terms of her football evaluation, Elmo admits to being "shallow" that way.
But that night, as she typed the keywords "Fujita" and "friend" and "ALS" into her computer, she was driven by empathy. For nine years, she had worked for Dr. Raymond Onders, who helped developed the Diaphragm Pacing System, which has allowed hundreds of spinal cord and ALS patients to breathe easier through electrical stimulation.
Onders had been performing the procedure at University Hospitals since 2000. His third patient was Superman, or at least the actor who portrayed him.
As her research expanded, Elmo discovered Gleason was a celebrity, too. She learned how his blocked punt in the Saints' first home game after Hurricane Katrina is considered one of the franchise's greatest plays. How he lives by the mantras, "No White Flags" and "Awesome Ain't Easy." How he created a video journal for his son, Rivers, knowing he probably would not live long enough to see the boy graduate from high school.
Elmo wondered that night if Gleason was aware of diaphragm pacing or that the doctor most accomplished in the field lived in Cleveland. Locating Fujita's website, she wrote him an email, outlining the benefits and attaching corresponding links.
As Elmo pressed send, she had no idea what the next 10 months held in store. She could not have foreseen Fujita's challenges or Gleason's triumphs and travails.
She told no one of the email. Three days later, her phone rang. She recognized the voice immediately.
"I'm Scott Fujita. I'd like some information on the pacing thing."
A friendship blossoms
Fujita always gets a smile on his face when he remembers meeting Gleason. He had just signed a free-agent deal with a franchise that, like so many of New Orleans' residents, had been displaced from its home in the fall of 2005 due to Katrina.
Some tried to dissuade him on New Orleans, citing the city's upheaval. But Fujita and his wife, Jaclyn, wanted to be part of the Gulf Coast's rebirth. One of the first persons to befriend them was the city's patron Saint.
Fujita was taking part in a conditioning program during the spring of 2006 when he met Gleason. Almost all his new teammates were in the weight room except for a free spirit who sat in the fieldhouse doing yoga.
"I said, 'Who is the guy with long hair?' and people said, 'That's Steve Gleason, he's on his own program,' " Fujita recalled. "I thought right then, 'I could get into this guy.' "
The Fujitas moved downtown and Gleason served as their tour guide to its vibrant culture. Everybody knew Gleason and Gleason knew everybody, his autographed picture hanging like a seal of approval in so many bars and restaurants. The player who Fujita calls the "adopted son of New Orleans" even married a local girl, Michel Varisco.
In Katrina's wake, Gleason's foundation launched "Backpacks for Hope," an initiative providing relief to young hurricane victims in the form of school supplies.
Gleason played seven NFL seasons, all with the Saints. He is best remembered for one play, a blocked punt in the team's first game back in the Superdome on Sept. 25, 2006, that resulted in a touchdown. The moment, captured on national television, became so synonymous with the city's comeback a bronze statue would be erected outside the stadium.
"I never want to overstate football's importance but there was such a connection between the team and the city that year," Fujita said. "It was an emotional wave that carried the team and the city through the rebuilding effort."
Gleason retired in 2008 and the next year began working as a consultant for a clean-energy company. Fujita shares Gleason's passion for environmental issues, as any Browns rookie caught throwing a Styrofoam container in the recycle bin can attest.
Fujita joined the Browns in 2010 after helping deliver a Super Bowl to New Orleans. He returned to the Bayou with his new team that season and played one of his best games as Brown. On that trip, however, Gleason confided that he had begun to experience odd twitching in the muscles of his upper arm and chest.
As doctors began ruling out possible causes, Fujita recalled losing an uncle to ALS, a disease that kills about two in every 100,000 people annually, according to the ALS Association. The average life expectancy is two to five years from time of diagnosis.
In the first week of January 2011, Fujita was at his California home when he received news from Gleason. The linebacker wept so uncontrollably his wife ran into living room assuming a close relative had died.
"We are football guys, we've always been in this football culture and at some point you want to hear someone say, 'Get back on that line and run another gasser, get back on the line and keep running.' " Fujita recalled. "Steve said to me, 'At some point, Bro, I might need you to keep me running,' And that's where we both kind of lost it on the phone.
"Anything I can do to help keep him running, I am all in."
Tumult and teaching
As Fujita helped his friend connect with medical personnel at University Hospitals in February 2012, he took a moment to consider "how the stars had to align" to make it possible.
What were the odds that Mary Jo Elmo, who helps treat ALS patients with a new technology, would be listening to Cleveland sports talk radio at the exact moment the hosts were discussing his friendship with Gleason?
Fujita is a board member of Team Gleason, a foundation that advocates for technological advances benefiting Lou Gehrig patients. Until Elmo's email, Gleason and his supporters were unaware of the pacing system, which received Food and Drug Administration approval for the treatment of ALS last year.
Through a series of correspondences, Elmo and Onders explained to the Gleasons how the device works. Four electrodes, or stainless steel wires as thin as dental floss, are implanted in the diaphragm. They are controlled by a hand-held, battery-powered external pulse generator that stimulates the diaphragm and causes the muscles to contract. Clinical trials showed patients delayed the need for tracheotomy ventilation by 16 months.
Approximately 30,000 Americans live with the disease, but only about 3,300 can benefit from the pacing system for various reasons, according to the ALS Association. To qualify, a patient must show signs of decreased respiratory function but also remain healthy enough to undergo surgery.
In April, Onders and Gleason met in New Orleans for a consultation. The doctor had watched the Super Bowl special and learned of Gleason's desire to provide and develop leading-edge technology for ALS patients. Gleason also was raising money for the nation's second ALS skilled-care residence, to be built in New Orleans.
"Steve is a very courageous man," Onders said. "When he got the disease he didn't try to hide it. He has given people hope through his work."
Fujita had witnessed a gradual deterioration in his friend's motor skills. The teammate who ran down fields fearlessly hurtling his body at kick returners was confined to a wheelchair in May when Gleason and Fujita traveled to New York to address a Social Innovation Summit at the United Nations.
They told the assembly how synthetic voice and eye tracking technology could assist ALS patients in the absence of a cure. The Team Gleason Foundation earned a $25,000 Chase Community Giving Award grant during the three-day event.
"Save my voice, my lungs and my thumbs, and I promise to change the world," Gleason told his audience.
As Fujita advocated for ALS awareness, he was blindsided by a charge that called into question his commitment to player safety. He was one of four players suspended by NFL Commissioner Roger Goodell for allegedly contributing to a bounty program run by a New Orleans assistant coach.
Fujita, who initially received a three-game ban, maintained his innocence. He's an executive board member of the NFL Players Association who championed player-safety reform during the last collective bargaining agreement in 2011.
It proved to be an emotional and volatile summer for the 33-year-old linebacker as he prepared for Browns training camp.
"Initially, I was very angry," Fujita said. "It's difficult to compete with this headline, sound-bite culture where they can express their message loudly and clearly and a lot more frequently than I can. All I could do was tell the truth. I would put my track record for player health and safety up against the league's any day of the week."
Debate over the impact of concussions and long-term brain damage has raged in NFL circles for two years. Is there a link between repeated head trauma and ALS? Onders has not seen evidence of it.
Fujita said "in my heart" he believes there's a connection between all the hits Gleason absorbed and his condition, but thinks his friend takes the most reasoned approach.
"27 NFL players have died from ALS over the past 60 yrs. Shocking?!," Gleason wrote on his Twitter account. "27 ALS patients, who never played in the NFL, will die today #CureALS."
As Fujita fought the NFL and dealt with a preseason knee injury he drew strength from Gleason, who has jumped out of airplanes, taken canoe trips and traveled cross country since his ALS diagnosis.
Gleason has compiled video journals teaching his son lessons most parents take for granted. One clip shows him teaching Rivers the proper technique for skipping stones.
"It was so pure and raw and sweet," Fujita said. "The legacy Steve is trying to leave behind to his son I think has helped make me a better dad."
Mary Jo Elmo, left, a nurse at University Hospitals in Cleveland, helped Steve Gleason, a friend of Browns player Scott Fujita, get medical help for ALS from Dr. Raymond Onders, right. The operation by Onders helped Gleason breathe more normally as he battles the disease.
Marvin Fong, The Plain Dealer
Disease hits home
Onders can still picture Tom Conlan, the first spinal cord patient implanted with a pacing system, answering questions about the procedure during a 2000 news conference.
The moment culminated three years of research and development alongside Dr. J. Thomas Mortimer at the Case Western Reserve University of Medicine. The next news conference, three years later, attracted an even larger audience.
The late Christopher Reeve, the paralyzed actor who had played Superman, spent four days in Cleveland under the veil of secrecy before addressing a media mob at University Hospitals on March 13, 2003. Reeve told reporters of how his hospital room fell silent the first time his ventilator was shut off.
"All you could hear is me breathing through my nose," he said. "I haven't heard that sound since May 1995."
The exposure from the Reeve surgery landed Onders on the "Today Show." The appearance yielded an unexpected and fortuitous bonus. One of Katie Couric's friends had suffered from ALS, and she convinced the host to ask the doctor if his pacing system could work for Lou Gehrig patients. "It definitely piqued my interest," Onders said.
In 2005, he implanted the electrodes in 49-year-old Susan Larson, of Rogers, Ark., making her the first person with ALS to undergo the surgery.
For the past 15 years, Onders has dedicated himself to increasing the quality of life for more than 600 spinal-cord and ALS patients. Last March, however, he could do nothing to ease the suffering of his sister, Carol Williams, who died of Lou Gehrig's disease. She was among the thousands of patients whose condition disqualified her to receive her brother's care.
Onders, who comes from a family of 10 kids, hopes medical science can find the breakthrough to cure a disease that adds more than 5,000 new diagnoses each year. Until then, he will pursue innovation that gives people such as Gleason more mobility and freedom.
Scott Fujita's Cleveland Browns teammates have taken a major interest in Steve Gleason's battle with ALS. Many of the Browns got together for a picture wearing various Team Gleason shirts. Fujita and Steve Gleason are former New Orleans Saints teammates helping to provide leading-edge technology for ALS patients. Gleason was diagnosed with the disease on Jan. 5, 2011. Fujita serves on the board of Team Gleason.
Courtesy of Scott Fujita, used with permission
Promise kept
The most chaotic and abbreviated regular season of Fujita's 11-year career began with him training alone at Baldwin Wallace University due to his three-game suspension. The linebacker was close enough to his teammates to hear the sounds of practice, yet powerless to help them get ready for the Sept. 9 opener against Philadelphia.
"Weirdest thing about training at Baldwin Wallace this week is hearing the whistles/horns at my team's practice, literally a [quarter]-mile away," Fujita wrote on his Twitter account Sept. 7.
Within hours of posting the Tweet, a three-member appeals panel overturned Goodell's suspensions, but gave the commissioner the power to apply future discipline. The wrangling went unabated throughout the fall as Fujita fought for vindication.
The Browns welcomed him back into the locker room and lineup. Teammates had begun to take serious interest in Gleason's story. Special teams ace Ray Ventrone always had admired his play. Early in Ventrone's career, a coach had advised him to model his game after Gleason's.
Ventrone ordered a Team Gleason T-shirt and posed with a group of teammates wearing them as a show of support.
"He was an incredible football player," Ventrone said. "It is so hard to see him have to deal with this huge obstacle that is probably going to take his life at some point. But the way he's handling it and raising awareness about ALS is really inspiring."
While the disease has paralyzed much of Gleason's body, it hasn't touched his mind. He uses eye-tracking technology to communicate with friends and fans.
Among his recent Tweets:
"Experts say I will die in 2-3 years. With perseverance, support, technology & creativity we will prove them wrong. U in?! –SG"
"Typing with your hands, fingers or thumbs is sooooo . . . 2011."
Gleason's resilience has helped Fujita deal with adverse times. In late October, an old neck injury flared and ended his season, possibly his career. Fujita admits he's contemplating retirement.
Although he missed being a part of the team, the premature finish to his season enabled him to devote more time to family and causes. It also allowed him the freedom to spend three days with Gleason earlier this month as doctors determined it was time to have the pacing system implanted.
Fujita rented a wheelchair-accessible van and met his friend and traveling party at the airport on Dec. 4. A day later, Gleason was wheeled into the same outpatient surgery center room where Reeve had his procedure. Onders required just 45 minutes to complete the task.
The doctor is a lifelong Browns fan, and he's heard the stories of the brotherhood that exists among men who play this violent game. He witnessed it over the course of two days. With Gleason's wife back in New Orleans tending to the couple's son, Fujita shepherded his friend through his stay at University Hospitals. He sat in the waiting room during surgery and at Gleason's bedside after it was over. He helped lift his friend onto tables and into his wheelchair.
Fujita was honoring his promise: Anything to keep his "Bro" running.
"Steve is still so upbeat and positive," Fujita said. "He still has a great smile and a helluva sense of humor. We were kind of the life of the party on our hospital floor."
The only downer was that Gleason and Fujita didn't unite with the woman who helped make their trip possible. Honoring a commitment made months earlier, Elmo was in Chicago for an ALS symposium.
Gleason and Fujita thanked her using Twitter. Elmo said she was happy to play a small part in Gleason's trip to Cleveland.
The good news continued the following week as former NFL Commissioner Paul Tagliabue, appointed to handle the second round of bounty appeals, vacated all the player suspensions. He went a step further in Fujita's case, observing the linebacker engaged in no "conduct detrimental to the league." The ruling served as vindication for Fujita, who hasn't spoken publicly about the findings, but is no doubt thrilled with the verdict.
Fujita plans to spend Christmas with his wife and three girls in California. "I love being able to re-live being a kid on Christmas morning, through their eyes."
Gleason will be surrounded by family and close friends in New Orleans, while Elmo will celebrate with her mother in Lyndhurst.
The Onders clan is gathering in Independence, and the doctor says the family will remember Carol, who it lost to ALS 20 months ago. He plans to keep Gleason in his thoughts, too.
His diaphragm-pacing system has brought international acclaim to Onders and comfort to many of its recipients. It saddens him, however, that their stories always end the same.
"The best thing in the world," he said. "would be a day when no one needs this device."