As one of Missouri's native sons, I find it difficult to say anything positive about the state of Kansas. As someone with paralysis, however, I have to give a hand to the boys of Sigma Nu at Kansas State University, who recently raised $7,000 for the Christopher Reeve Foundation, as noted in this article from Eric Davis in the Kansas State Collegian:

A sea of purple tie-dye could be seen all day Saturday in front of the Sigma Nu fraternity house, where 11 bands took turns rocking two stages to help raise money for the Christopher Reeve Foundation at the annual Sunset Revival.

The main stage was set up on the front lawn at the bottom of the hill, and the second stage was tucked away in the back between two basketball goals.

Ben Meyer, sophomore in business management and Sigma Nu's organizer for the event, said the day went well overall; and more than $7,000 was raised for the Christopher Reeve Foundation. The foundation is dedicated to curing spinal-cord injury by funding innovative research and improving the quality of life for people living with paralysis through grants, information and advocacy, according to the Christopher and Dana Reeve Foundation Web site.

"The biggest thing I was concerned with was weather," Meyer said. "[The weather] turned out well."

Meyer also said more than 3,000 people attended the event and 1,000 people were at the concert at any given time.

The event started at 11 a.m., but the lawn didn't start to fill until about 2 p.m. Not many attendees arrived solo. Attendees in purple shirts arrived in droves when Lloyd Likes Mike, a local band, started playing.

While still warming up, Lloyd Likes Mike preformed a quick version of the theme song from the popular TV show "The Office."

Many of the "Sunsetters" spent the afternoon hanging out with friends.

Joey Harper, freshman in business management, attended Sunset Revival for the first time. Harper said he enjoyed being outside and hanging out with his friends.

Because the Sunset Revival is a well-attended annual event, there also was a great deal of anticipation leading up to the event.

Harper and like most of the other first-timers, said he didn't know how the day would turnout.

"I didn't know what to expect," Harper said. "I did expect that it was going to be a good time."

A Model For Independent Living

Very interesting article from the Bainbridge Island Review's Chad Schuster:

Like many others in his line of work, Todd Stabelfeldt grew up with technology.

He watched with interest as the Internet took off in the 1990s, and quickly developed a liking for computers.

Eventually he plugged in, taking classes and landing a job at Cortex Medical Management Technology, a Seattle software company.

“I’ve wanted to reach out since I was a young kid,” said Stabelfeldt, who at 29 is now Director of Operations at Cortex.

It is that impulse – the desire to connect – that in part influenced Stabelfeldt’s career choice and his interest in gadgetry.

But he has an equally pressing personal motivation to remain on the cutting edge.

As a quadriplegic, it is technology, combined with initiative and ingenuity, that affords Stabelfeldt his most prized possession — independence.

“That’s a word that for me that is bold, italicized, underlined and capitalized,” said Stabelfeldt, surrounded by the various devices at his Wyatt Way apartment that allow him to work and live, for the most part, on his own terms. “There’s no dollar amount to solve for that.”

Neither, he said, are there enough dollars to solve the plight, however uncommon, of someone in his position – physically disabled, but able and preferring to work.

Though he strives toward independence, living in a standard apartment with a roommate, Stabelfeldt still requires care that isn’t getting any cheaper.

In fact, he expects his care costs this year to double, to $110,000, due to recent changes – his caregivers can no longer be designated as independent contractors – that will require him to pay higher taxes.

He makes too much money to qualify for government help, but not enough to pay for the support he needs.

So, even as he continues to pursue greater independence, he must continually fight to preserve what he has.

Now, through the creation of a foundation that will bear his name, he wants to help others facing similar challenges.

Funded by several technology companies, the Todd Stabelfeldt Foundation is slated to launch in the next few months. Its aim is to connect people with disabilities to new technology and other help that might otherwise elude them, and to reach out to occupational therapists in an effort to continually improve available care.

Stabelfeldt’s life, too, will be enriched.

By sharing his story, he hopes to become a national spokesman for overcoming disabilities; he’s even in discussion with an island developer about the possibility of building a customized condo that would serve as a model for disabled, but independent, living.

Stabelfeldt was recently the beneficiary of about $30,000 worth of new batteries that will back up the labyrinthine electrical system he’s fashioned in his apartment. Donated by power system company Chloride Group, PLC, the batteries will replace the outdated and underpowered ones that can no longer keep up with Stabelfeldt’s gadgets. Without proper backup, Stabelfeldt’s entire system – including the breathing apparatus he uses when he sleeps – are useless if power outages occur.

Chris Gerhardt, who lives on Bainbridge Island, is helping Stabelfeldt organize the new foundation. He said it needs between $1 million and $2 million to get off the ground.

Several tech companies – among them Chloride and Internet technology consulting company Denali Advanced Integration, of which Gerhardt is the president – have committed funding to the foundation, the logistics for which are now mostly in place.

Its mission, Gerhardt said, is far reaching.

“This isn’t just about Todd,” he said. “This is about sharing what Todd has done.”

As a fellow techie, Gerhardt is impressed with Stabelfeldt’s resolve and resourcefulness; as his friend, he is inspired.

“Sometimes I’ll start to complain to Todd about something, and then I think about it and realize I can’t,” he said. “I joke with him about it. I tell him it’s hard being friends with someone you can’t complain to.”

Stabelfeldt admits he’s not been immune to the urge to complain, since suffering the injury – he was accidentally shot by his cousin at the age of 8 – that robbed him of most physical movement.

He remembers one time in particular, when he was a child, that he was upset by a bed sore.

“I got really angry about my whole situation,” Stabelfeldt said. “There was a moment when I said, ‘What are you going to do with this. This is not acceptable. I need to make a change.’”

So, Stabelfeldt shifted his attitude.

He began looking for way to complete the daily tasks that most people take for granted, like turning on lights or opening doors. Some fixes were simple. Others required elaborate planning. He adapted parts to non-conventional uses. If he couldn’t find the right piece, he called around until he did.

Slowly, solutions came, until eventually Stabelfeldt had created the ever-evolving system that now is vital to his independence.

“Part of it was just waiting for technology to catch up with my needs,” he said. “Items were being created at a rapid rate for convenience so that people could pick up a two liter of Coke and a bag of chips and never leave the couch.

“Those convenience items, if slightly augmented, become independence items for me.”

His cell phone, for example, is an off-the-shelf model. But Stabelfeldt had to come up with a way to modify it to fit his unique needs. Like all of his creations, the entire unit must be voice activated, or must respond to movements of his chin, breath or face. Compared to some of his projects, Stabelfeldt said, the cell phone modification was fairly simple. Unfortunately, simple doesn’t always equate to cheap – in this case, the fix cost several hundred dollars.

More complex arrangements are found at his workstation – Stabelfeldt still physically commutes to Seattle once a week – and in his bedroom, where he has access to more movies and entertainment than he has time to enjoy.

He controls his computer by way of his mouth, which he uses to move the mouse via a special instrument; puffs of air equal mouse-clicks.

Gerhardt, who met Stabelfeldt about four years ago during their respective ferry commutes, said he regularly marvels at his friend’s ingenuity.

“This doesn’t exist anywhere,” he said, of Stabelfeldt’s cell phone. “He came up with it in his head.”

Though he knows some of his innovations can help others, Stabelfeldt said not everyone can benefit directly from them. For one thing, he’s on the severe end of the paralysis spectrum; since many who suffer his specific injury don’t survive the initial trauma, there are few people who even face his living situation, let alone while trying to hold down a full-time job.

“My circumstance is so outside of the norm that I’ve almost fallen into the category of the bizarre,” he said. “That’s part of the frustration for me – I just can’t handle the fact that I’m the only one I know.”

Aside from making available some of his gadgets, Stabelfeldt hopes to motivate others with his story. He already participates in mentor programs and has increasingly taken on large speaking engagements. This year he spoke at the Denali Christmas party.

“There wasn’t a dry eye in the room,” said Denali Executive Vice President John Convery. “Seeing him in front of those people is tremendously inspirational. He teaches people that if they set the bar high and reach high they can improve the quality of their life.”

Last month, as workers were installing his new batteries, Stabelfeldt said he’s excited about the promise of his new venture.

As for his own troubled financial situation, he’s frustrated, but hopeful. Gerhardt has often said Stabelfeldt is a victim of his own success, since he’d rather work than be supported by the government. Not content to be a victim, Stabelfeldt characterizes the situation differently.

“Either this year I’ll make it or I’ll end up in a nursing home,” he said. “But I don’t settle. I don’t rest until it’s done.”

Being Cool Has Its Benefits

According to the Spinal Cord Injury Information Network, there are about 11,000 new cases of spinal cord injuries each year in the United States. As of June 2006, there were about 253,000 people living with a spinal cord injury.

When a spinal cord injury occurs, there is the primary insult -- the impact -- which neither doctors nor patients can do anything about. But there are also secondary injuries -- the damage that happens in the minutes, hours, days and weeks after the primary injury.

Dalton Dietrich III, Ph.D., from the Miami Project to Cure Paralysis, said, "You have these secondary injury mechanisms that lead to progression of damage and that's where we are working in the laboratory to develop new strategies, new drugs, new therapies to target that secondary injury." Doctors are running icy cold saline through the bodies of newly injured patients to lower their body temperature to about 92 degrees for two days immediately after their injury.A new treatment for spinal cord injuries is under study at the Miami Project to Cure Paralysis. In animal studies, Dr. Dietrich said, "We found that if you lowered temperature of the spinal cord after injury, we could actually improve motor function. The rats walked better. Also, if you looked at the pathology of the spinal cord, there was preserved tissue."

It was promising enough to try in humans. The first human patient was "cooled" in January 2006. Several more patients have received the treatment since in an experimental study. Dr. Dietrich said, "So far it looks like it's safe. We've gotten some good results. It appears to limit secondary injuries that can lead to progression. [Spinal cooling] does a lot of good things. Cooling a patient a couple degrees seems to work very, very well."

Dr. Dietrich says the earlier the treatment is started after the initial injury, it's likely the results will be better. He attributes the impact of hypothermia to its ability to affect multiple injury mechanisms, rather than targeting just one as drugs so often do." You actually need a combination therapy ... to actually stop cells from dying and that's what hypothermia does. It targets multiple injury mechanisms and leads to long term protection. It protects those axons running up and down the spinal cord, which is extremely important in having the brain talk to your muscles and vice versa," Dr. Dietrich said.

He emphasizes that it is important to not cool the body too much. There is a very distinct temperature that needs to be reached for the procedure to be safe and effective. Cooling the body too much can cause side effects like cardiac arrhythmias and infection.

Dietrich says, "If you can limit those secondary injuries, you can turn a complete injury possibly into an incomplete injury and there you have the best chance with that rehabilitation strategy to now regain significant walking function, sensory function and other consequences associated with spinal cord injuries."

The technique is still under study in Miami.

Celebrating Life

Esmeralda Galvan remembered her daughter Sofia's long, good-spirited fight for life in their home in Fresno.

Sophia Elena Galvan, 26, died March 20, and the Mass was celebrated Friday in St. Helen's Catholic Church.

Miss Galvan's relatives and friends remembered a highly intelligent, dedicated woman who persevered despite painful injuries she suffered when another driver's truck struck her family's car when she was about 18 months old.

From toddler to student carrying a 4.0 grade-point average, she remained upbeat, even during her last years as a quadriplegic.

Miss Galvan had managed cheerfully to bear an ordeal that began when a vehicle driven by a 70-year-old man, who apparently was lost, ran through a stop sign and into the Galvan family's car.

It rolled twice, Esmeralda Galvan said.

Miss Galvan was injured high on her spinal cord, causing paralysis and impeding her breathing.

She was treated at University Medical Center, Valley Children's Hospital and finally Fresno Community Hospital. She underwent six operations on her eyes.

She spent her last three years in and out of the intensive care unit, Esmeralda Galvan said: "Everybody there knows us."

Esmeralda Galvan and aunts Linda and Pearl Guillen spoke in the family's living room in grief brightened by happy memories.

They spoke of how Miss Galvan had a life of medical crises, but also a spirit that always showed.

"The last two years, Sofia was in and out of the hospital with pneumonia, and coded on me seven times," her mother said with a tone that mixed her love of her daughter, and her effort and sense of accomplishment at extending her daughter's life. The short-hand "coded" referred to times when Miss Galvan's heart had stopped until medical intervention got it beating again.

The original traffic collision, followed by medical crises, failed to keep Miss Galvan from excelling at Roosevelt High School.

She never complained, her family said. When she got a new wheelchair, she said happily, "As soon as the weather's good, I'm going to go out."

She looked forward to meals at the family's favorite DiCicco's restaurant.

Miss Galvan took pride in her survival and success, telling people, "I'm a miracle child."

She received 24-hour in-home supportive care under the state Medi-Cal and Healthy Families Program.

Her aunts recalled a camping trip Miss Galvan loved, but Linda Guillen didn't. She called it "my first and last time. I don't sleep on rocks."

Miss Galvan's mother and aunts remembered how they had come to live with her severe injuries while celebrating the life she made for herself.

They concluded that it is the quality of life, not its length, that counts.

Miss Galvan had known more than her share of suffering, they said. Her father, Roberto, had died on Christmas 1998 from a drive-by shooting.

She loved watching "Days of Our Lives" on daytime television and remained excited at the autographed photo sent to her by Peter Reckell, who plays the character Bo Brady.

Comedian George Lopez sent her an autographed photo, hat and T-shirt plus a signed script from his show.

Miss Galvan celebrated an 18th birthday telephone call she received from running back Herschel Walker, then playing for her beloved Dallas Cowboys. Cowboys quarterback Troy Aikman sent her a signed jersey.

Miss Galvan had been a star herself at her graduation from Roosevelt High in 2000, receiving a standing ovation as she participated from a gurney. Esmeralda Galvan remembered how her daughter and the rest of the family enjoyed her triumph together.

Kevin Everett Visits Miami Project

The moment wasn't poignant simply because former NFL and University of Miami player Kevin Everett finally got to see the facility Friday and meet the men whose research perhaps saved his life. It also was special because Everett was able to walk into the lobby of the Miami Project to Cure Paralysis.

Doctors feared Everett would never walk again after injuring his spinal cord while making a tackle for the Buffalo Bills on Sept. 9. But thanks to an experimental treatment suggested by the Miami Project, Everett has overcome grim odds.

"This is how close we are to finding a cure," said Marc Buoniconti, the former linebacker who was paralyzed in a 1985 college football game and since has served as the Miami Project's driving force.

"It's great to have Kevin standing here. Months ago, he was lying on a field paralyzed as I was. The next step is to get us all out of wheelchairs."

Everett said it was ironic that the Miami Project is just a mile from the Orange Bowl and 4 miles from where he attended college.

He has started his own foundation that will assist victims of spinal-column injuries.

"I think it's amazing all the research they've been doing," Everett said. "You can see that it works. I do feel like one (a miracle). They practically saved my life. This is where I wanted to be again, up and walking around."

One of the biggest supporters of the Project is Bills owner Ralph Wilson. He donated, having no idea his money might someday help save the life of one of his own players.

Bills orthopedic surgeon Andrew Cappuccino learned of an experimental technique to place patients into moderate hypothermia by infusing cold saline. He learned of it at a seminar given two years ago in Palm Beach by the project's scientific director, W. Dalton Dietrich.

"Andy Cappuccino really made a major step in translating what we're doing in experimental studies," Dietrich said. "When we go out and talk to people, people are listening. This project can change the way we treat people, and that's what we're trying to do every day."

Miami Project co-founder Barth Green said there's a chance all NFL teams will have hypothermia kits on their sidelines and medical personnel trained to use them.

"This doesn't work for everyone all the time," Green said. "We haven't hit a home run yet. But we are rounding first and we're getting to second base a lot quicker."

While Everett has come a long way, he has many challenges ahead. Because he lacks dexterity in his hands, he has problems doing basic things, such as tying his shoes or brushing his hair.

"I'm far away from being normal," he softly said. "I still have a long ways to go."

His NFL career obviously over, Everett has to find another way to make a living. He was asked how difficult it is to know he can no longer play the game he loved since childhood.

"The reality is I can't play anymore, so I've got to find something else I'm good at doing," said Everett, 26. "Everything happens for a reason.

"It was bad timing with the hit. But it just happens. I just accepted that. There's nothing I could have done about that."

Qualcomm event has seen death, paralysis

Tonight, top motorcycle riders from across the country will be leaping over and powering through a demanding obstacle course on the floor of Qualcomm Stadium.

But these are not daredevils. They are finely tuned athletes, the fastest of whom earn seven figures a season.

Yet Supercross is as dangerous as it is spectacular.

Most riders are broken or retired well before their 30th birthday. And some riders pay a much bigger price.

Since the 2000 season, one rider has died during the annual Supercross at Qualcomm. Another, James Marshall, was permanently paralyzed. A third, Jimmy Button, suffered a serious spinal cord injury. Two more riders suffered paralyzing injuries at other events last year.

It's the side of the sport you don't see on those flashy television commercials.

“Riders know the risk,” Button said Thursday. “But you are young and believe it can't happen to you. For motocrossers, there is a small window of opportunity. At the same time, you need to be aware it can end in an instant.”

Since recovering from the injury he suffered here, Button has become a rider's agent. He has also founded the Road2Recovery Foundation, which offers assistance to injured riders and leads a drive to improve rider safety.

“Riders today have neck protection that reduces some of the risk,” said Button. “But the sport is what it is.”

Currently, a pro Supercrosser has to pay $39,000 a year for $1 million of disability insurance.

“Most riders can't come close to affording that,” said Button, whose group is backed by riders, fans and sponsors. “So Road2Recovery helps any way we can.”

Button's road to recovery from his 2000 accident at Qualcomm was long. He still walks with a decided limp. “But I walk,” he says. Button was hospitalized for eight months after his accident.

Button, who considers himself fortunate, was paralyzed when he left the track that night.

“Four weeks after the accident, one of my fingers started to move,” Button said. “Five months after the accident, I was able to stand.”

The common link between the three most serious racing accidents at Qualcomm is that none was a product of speed or a jump.

Jason Ciarletta, 19, of Riverside was killed on Jan. 24, 2004, when he crashed over a berm while braking at a turn. Marshall and Button were injured when they hit a hole.

“I was moving a little quicker than I could walk, maybe three miles an hour,” said Button. “I was just studying the track after they made some changes. I hit a hole and plunged face-first into the ground.

“When I was lying there, I realized not a damn thing was working. Had I been going faster, I probably would have bounced and rolled and broken something. But at those speeds, I was like a lawn dart. I'd have taken a broken femur any day of the week.”

Instead, Button, who was one of the series' top riders at the time, suffered a bruised spinal cord and damage to the area of his third through sixth cervical vertabrae..

“I never lost consciousness, which probably saved my life,” he said. “I was having a terrible time breathing. Had I been out, I don't think I would have kept breathing.”

At the time, Button's accident was the first serious accident in Supercross since 1987.

By Bill Center

UNION-TRIBUNE STAFF WRITER

Paralyzed Mice Able to Regain Movement, Study Reveals

Happy New Year. Mice can walk again. Have to start somewhere, I suppose...

The brain is a stubborn organ. When faced with a roadblock, it works to find another way. It fumbles to repair itself. Researchers have found new evidence of the brain's ability to adapt to injuries by studying the spinal cord of a paralyzed mouse.

The mouse's brain and spinal cord can, when left to their own devices, sometimes bypass an injured area, creating a series of detours to find their own way to send the necessary messages from the brain to limbs to allow movement again, according to a new study. "This is perhaps the most exciting thing I've ever worked on. And I've been at this for 30 years," says Michael Sofroniew, a University of California, Los Angeles neurobiologist and the lead researcher on the study, which was published last week in Nature Medicine. He cautions, however, that the work in mice, while exciting, is still a long way from providing a cure for human spinal cord injuries. It's not new to scientists that the brain has the ability to change its structure to cope with the environment. In fact, the brain is continually growing, pruning and rewiring its connections as we develop and learn new skills. But until now, the prevailing belief has been that treating a spinal cord injury requires repairing the original nerves, which carry the signals sent from the brain to the body. The fact that the brain's plasticity extends to the spinal cord is novel, and may hold clues for rehabilitation and treatment for some spinal injuries. The spinal cord, a long, thick cluster of nerve tissue that extends from the brain to the base of the spine, contains portions of the longest nerve cells in the body. These nerve cells have stringy branches called axons, which are pathways the brain uses to send messages to the body. It is believed that the long nerve cells -- called supraspinal nerves -- originate in the brain and connect to a complex system of shorter nerves -- propriospinal nerves -- in the lower lumbar region of the spine. These short nerves connect to another short nerve fiber, which connects to the muscles that allow you to cross your legs or kick a soccer ball. This nerve circuit controls walking. When the nerves are severed, the messages are disrupted, and the ability to walk is lost. A hard hit to the spine can lead to a devastating injury. As many as 11,000 people suffer spinal cord injuries every year and nearly 300,000 people in the United States are living with spinal cord injuries, according to the National Spinal Cord Injury Statistical Center. The question, Sofroniew said, was whether the long nerves needed to be repaired after an injury or whether other nerves could reorganize to take on their duties. "There's been a groundswell in other areas like stroke that the brain can make at least small adaptations. And we are continually surprised by its ability to do so," he said. In their experiment, the scientists severed the long supraspinal nerve of one side of a mouse's spine, paralyzing one hind leg. Ten weeks later, they severed the nerve on the other side of the spine in a different spot, paralyzing the second hind leg. The injury meant that the brain was no longer able to send messages through these long fibers, and the cuts resulted in paralysis. But over time, both limbs recovered. As time passed, the mice began to exhibit what Sofroniew called "discoordinated movement." Walking involves alternating different sets of muscles, or contracting certain muscles while others relax. But at first the mice were trying to use all of the muscles at once. Over time, they became more coordinated until finally they were able to walk again. Their movement was less efficient than it had been before the injury, but they were walking. The researchers suspected that the brain had rerouted messages to the spinal cord via the shorter propriospinal fibers. When the scientists injected chemicals into the short propriospinal nerves, the paralysis returned, confirming their hypothesis. The short nerves were compensating for the long ones. They were crucial to the recovery. Sofroniew uses a freeway analogy to explain the process. "If you can't get through on the freeway, you get off and drive through a series of surface streets. It's less efficient, it takes longer and it doesn't work quite as well, but you can get through." Reggie Edgerton, professor of neurobiology and physiology at UCLA and a co-author of the study, said he thinks the mice were exercising their brain well before they could move again. When they tried to move, the brain circuits that controlled movement were activated, and this strengthened the relevant pathways, allowing new connections to form. "We think spontaneous recovery is in part due to routine practice occurring in the cage," he said. "They were trying to walk, and the brain was already trying to reestablish connections due to intent." In other words, brain activity led to new cellular connections that, in turn, reprogrammed the brain and spinal cord. In this case, the brain and spinal cord were reprogrammed to learn how to walk again by using a different circuit of nerves. "One should not generalize too far," cautions James Guest, associate professor in neurological surgery at the University of Miami. "It's a very interesting experimental observation. But whether this applies to people or not is unknown." Extending the findings to another species would be useful, he added. "If you could verify that these same sort of changes could occur in another species, you'd be making the case that this is a paradigm of biology. And you could explore how to manipulate this." Sofroniew hopes to be able to apply the work to humans someday. He hopes that drugs or growth hormones could be used to assist nerve growth and spur recovery. Partial spinal cord injuries in particular, or injuries where some tissue is spared, could benefit. It's possible, he speculated, that similar connections are already being made in humans, "but we're not getting them to work properly." "We want to look at ways in which we can try and get these guys to grow," he said. "Our study suggests this is something worth trying to do."

By Jenny Marder, The NewsHour with Jim Lehrer