Potential Fall/Winter 2014

potential A publication of Kennedy Krieger Institute

Lifeline:

Guiding Families through Complex Medical Care Back from Near-death: Emerging Consciousness after Brain Injury

Research:

The Neuroscience of Movement

Childhood Restored: Inspiring Two-year-old Battles Paralysis

We are all born with great

potential

shouldn’t we all have the chance to achieve it?

A publication of Kennedy Krieger Institute Volume 14, No. 2 • Winter 2014

WHERE ARE THEY NOW? Christian Thomas: Zen and the Art of Healing One patient’s journey from diagnosis to top of the dojo

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FEATURES

Letter from our

President Many of the children who come to Kennedy Krieger need our care throughout childhood. For these children, we are able to address the entire spectrum of problems that affect their development by bringing together specialists from many different disciplines, all under one roof.

In this issue of Potential, we’re featuring a few such patients who have relied on our care over the years. You may recognize faces you’ve seen before. Willie Burson was first featured in this publication eight years ago in a story about our feeding disorders program. Christian Thomas appeared in our magazine when he was four, in a story about therapy for cerebral palsy. Both boys are several years older now, but still under the care of doctors at the Institute who address their changing needs.

Back from Near-death Helping a non-responsive child battle her way back from a severe

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brain injury Childhood Restored Activity-based restorative therapies got two-year-old Penelope Miller back on her feet after a spinal cord injury Lifeline Conquering complex medical conditions together: One family’s

PROGRAM SPOTLIGHT Bennett Institute Physically Challenged Sports Program Bennett helps athletes with disabilities get off the sidelines and

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into the game

RESEARCH FRONTIERS The Neuroscience of Movement How brain stimulation post-injury can affect learning and recovery

IN MY OWN WORDS

Penelope Miller is making great progress in our International Center for Spinal Cord Injury, and we’ll continue to provide care and therapy for her as she grows.

NEWS BRIEFS & EVENTS

Thank you for being a friend and supporter of Kennedy Krieger Institute.

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journey with Kennedy Krieger

Also featured: read how Charnira Berry was brought back to consciousness by specialists on our low responsiveness unit after a severe brain injury. Five years later, she’s now a thriving student at Kennedy Krieger School Programs.

At Kennedy Krieger, we have all the keys to help these children as they grow, whether it's individualized patient care, innovative research, specialized education, or community initiatives. And we’ll continue our dedication to training the next generation of professionals, who will go on to help children here and around the world.

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Marc Russo: Have Dreams, Have Discipline, Have Fun Auditory processing disorder won’t keep this 13-year-old from accomplishing his dreams

Kennedy Krieger in the news and upcoming Institute events

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POTENTIAL EDITOR

ART DIRECTOR

CONTRIBUTING WRITERS

AVP MARKETING AND PR

Kristina Rolfes

Peggy White

Allison Eatough, Abigail Green, Christianna McCausland, Marc Russo

Bryan Stark

MEDIA INQUIRIES

Bryan Stark

PROOFREADER

Nina K. Pettis

PUBLICATION INQUIRIES

CREATIVE SERVICES MANAGER

Sarah Mooney

443-923-7330 or TTY 443-923-2645

PHOTOGRAPHY

Steve Parke, Jason Putsche, Bill Schilling For appointments and referrals, visit kennedykrieger.org/patientcare or call 888-554-2080.

Sincerely, Gary W. Goldstein, MD

Potential is published by the Marketing and Public Relations Department of the Kennedy Krieger Institute, 707 North Broadway, Baltimore, Maryland 21205. Kennedy Krieger Institute recognizes and respects the rights of patients and their families and treats them with courtesy and dignity. Care is provided in a manner that preserves cultural, psychosocial, spiritual and personal values, beliefs, and preferences. We encourage patients and families to become active partners in their care by asking questions, requesting resources, and advocating for the services and support they need.

If you do not want to receive future communications from Kennedy Krieger Institute, you may notify us by emailing unsubscribe@kennedykrieger.org or visiting kennedykrieger.org/unsubscribe. © 2014, Kennedy Krieger Institute

On the cover: 12-year-old patient Willie Burson at Jonas Green Park in Annapolis, Maryland.

For more inspiring stories, news, and updates, visit potentialmag.kennedykrieger.org.

WHERE ARE THEY NOW?

Zen

& the Art of Healing

One patient’s journey journey from diagnosis diagnosis to to top top of the dojo Where Are They Now? Christian Thomas, 13, who last appeared in Potential when he was four, is now a black belt in karate. It’s a rigorous accomplishment that requires multiple mile runs, sparring matches, and memorization of martial arts moves. His achievement is all the more remarkable when one considers that Christian was diagnosed with cerebral palsy and hydrocephalus at birth. His parents were told he would likely have difficulty using his left arm and leg.

When Christian was a toddler, his parents, Steven and Elena, learned about constraint-induced and bimanual therapy (CIMT), a pediatric rehabilitation program directed by Frank S. Pidcock, MD. Children like Christian who have one hand or arm that is stronger than the other will naturally favor the stronger limb.

CIMT places a cast on the stronger extremity and engages the under-utilized limb in occupational and physical therapy using play-based, intensive practice in gradually more challenging ways.

For some patients, complementary therapy techniques such as electrical stimulation and robotic devices are also used to help improve strength and function.

“The doctors and therapists at Kennedy Krieger have been an integral part of Christian’s progress,” says Elena. “He worked very hard; however, the doctors and therapists also worked hard in helping him progress and meet his goals.”

Bottom: Christian, age 4, during therapy at Kennedy Krieger. Middle: Christian with Dr. Pidcock at his black belt ceremony. Top: Sparring with a teammate.

Steven, Elena, and their daughter have each achieved the black belt rank, so they know the physical and mental challenges that must be met to wear the belt. “We were overcome with emotion when Sensei tied his new white gi and black belt around Christian’s body,” says Steven.

Dr. Pidcock was there to share the moment. “I was very happy to be there, and proud of all the hard work that Christian and his family had done,” he says.

Early pediatric rehabilitation therapy paid off for Christian.

Steven says they saw results from Christian’s CIMT immediately over a family vacation. “He was able to use his left, weaker hand to push the cast off so he could go swimming in the lake with his sister,” he recalls. “That evening he ate with his left hand, which he had never done in the past.”

When Christian began the CIMT program, he had little use of his left side. After CIMT, he had the building blocks to grow his mobility. A karate-themed birthday party first ignited Christian’s passion for martial arts. Christian suggested that his doctors be invited to the ceremony when he attained the black belt.

Christian no longer receives physical or occupational therapy, although he is still followed by Dr. Pidcock. The longevity and depth of the relationship between the Thomas family and Christian’s team of doctors and therapists speaks to the heart of what makes care at the Institute so unique. n Christianna McCausland

Visit potentialmag.kennedykrieger.org/Christian to learn more about Christian's story and the Institute's constraint-induced and bimanual therapy programs.

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m o r f k h c t a a B Near-de

main in e r o t jury ected n p i x n e i a d r ort an to a b p s ess. p k n u n s s a u h e t o f i i , l c y cons as on vitalit o w t f n o a i l r l i e u n g he is f tients emer , Char s o , g 5 a 1 s r w a a Five ye tive state. No -responsive p n ta a vege that helps no m progra

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o one could have known that day how 10-yearold Charnira Berry’s life would be dramatically altered—or just how close she would come to struggling for survival. Her family was getting ready to go out, and while her father and siblings bustled around her, Charnira remained on the couch, sleeping. When her family was unable to rouse her, they realized something was seriously wrong. Charnira had suffered a heart attack.

By the time the ambulance arrived, she had sustained an anoxic brain injury, due to a lack of oxygen to the brain. At the hospital, she was non-responsive and needed advanced cardiac life support. Doctors told her family she would likely remain in a vegetative state for the rest of her life.

“They pretty much gave up on her,” remembers her mother, Karen Earle. “They didn’t expect her to make it; they wanted to pull the plug.”

But Charnira’s family wasn’t giving up. They sought a second opinion at another hospital, where doctors treated Charnira’s underlying heart condition—she had been born premature and had open heart surgery as an infant—and referred her to the Brain Injury Unit at Kennedy Krieger Institute, which specializes in increasing the responsiveness of patients who are in a minimally conscious or vegetative state due to acquired or traumatic brain injury.

“It’s not uncommon for patients in Charnira’s condition to have gotten a very poor prognosis,” says Beth Slomine, a neuropsychologist who co-directs the interdisciplinary responsiveness program, along with behavioral psychologist Adrianna Amari and pediatric rehabilitation physician Stacy Suskauer.

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Opposite page: Charnira, now 15, attends Kennedy Krieger School Programs, where she is known for her bubbly personality. Right: Charnira learning to walk in physical therapy.

Below: Showing off her beautiful smile.

“It takes a careful approach. If you’re not watching closely, you might miss subtle signs of responsiveness, and if that happens, patients may not get the rehabilitation they need.” ­— Beth Slomine, neuropsychologist

Subtle Signs of Responsiveness

Charnira’s brain injury was severe, affecting the critical subcortical regions that are responsible for so many functions—the brain’s “railroad stations,” as Dr. Suskauer puts it. The team had their work cut out for them.

“When patients are admitted, we look very closely for evidence of responses to the environment,” says Dr. Slomine.

This proved extremely difficult in Charnira’s case, because when she arrived she was heavily sedated by numerous medications to manage her near-constant muscle spasms and seizures. She needed to be carefully weaned off the drugs that might be impairing her responsiveness, without causing increased spasms or seizures. “It was really critical that we find the right combination of medications,” says Dr. Suskauer.

For patients like Charnira, specialists use a unique three-tiered approach of medication management, assessment of sleep cycles and responsiveness, and identification of stimuli that promote responding.

The team asked the family to identify sights, sounds, or smells that Charnira might respond to. Behavioral psychologists experimented with different stimuli and tracked the results. Charnira responded best to voices of her family, so a recording of their voices was incorporated into her therapy.

Her daughter first showed progress after about two months, says her mother. She

noticed Charnira was reading the captions on TV. And she was able to nod her head in response to a question.

gets close enough, she can get out of her wheelchair and onto her bed. That progress came while she was at Kennedy Krieger.”

Over the course of her intensive treatment, Charnira began emerging into a more conscious state. She was able to consistently interact with her environment and the people around her, and learned to communicate with a voice output device.

While Dr. Suskauer notes that not every patient has an outcome like Charnira’s, “Given her injuries, we were proud of the progress she made. She stands out as someone for whom there were really clear benefits of working together as a team.”

A World Away from Where She Started

Her family could not agree more. “I am so appreciative of Kennedy Krieger,” says Earle.

“They went above and beyond for Charnira.”

After several months of inpatient rehabilitation, Charnira was stable enough to return home. Earle says the staff helped with the transition by showing her how to help her daughter get out of bed and into her wheelchair, and visiting their home to make sure Charnira could safely get in and out of the house. Charnira continued her therapy in the Institute’s therapeutic day program, which helps transition patients who are undergoing intensive neurorehabilitation back into their home, community, and school life.

Now 15, Charnira attends school at Kennedy Krieger and can walk with a walker, stand on her own, and speak a few words.

“She’s always smiling, always happy,” says Earle of her daughter, who is known for her pretty smile and positive attitude.

“She can go to the edge of her wheelchair, plant her feet on the floor, and stand up. If she

n Abigail Green and Kristina Rolfes

Visit potentialmag.kennedykrieger.org/ Charnira to learn more about Charnira’s story and the Institute's brain injury programs.

Childhood Restored

Activity-based restorative therapies got Penelope back on her feet after a spinal cord injury About a week after Penelope Miller was born, in July 2012, her parents noticed her leg movement was more frog-like than her older brother’s was when he was a baby, and she didn’t have a strong kick. A visit to the doctor determined that everything was fine. Yet her parents, Tim and Heather, remained concerned. The family continued to visit doctors, and Penelope seemed to get stronger.

Until March of 2013. At the beginning of the month, Penelope was in such pain, particularly at night, that she writhed in her crib. Doctors diagnosed extreme constipation.

Tim noticed thereafter that his daughter wasn’t standing as well, but thought she was dehydrated. By mid-month, she was completely paralyzed from the waist down. She was eight months old.

A Shocking Diagnosis An MRI revealed a tumor inside Penelope’s spinal canal that was compressing her spinal cord. The tumor extended into her abdomen. Penelope was diagnosed with neuroblastoma, which would require chemotherapy and surgery.

A neurosurgeon successfully decompressed Penelope’s spinal cord, but the surgery and impact of the tumor took their toll. When she returned home, “She couldn’t roll over or even sit up by herself,” says Heather. “She had no sensation or movement from her belly button down.”

Penelope’s physical therapist knew the family had an unparalleled resource for their daughter’s paralysis at the International Center for Spinal Cord Injury (ICSCI) at Kennedy Krieger Institute. “The home therapy was great,” says Heather, “but we needed more equipment. Everything we needed would be at Kennedy Krieger.”

Power Play After months of therapy, Penelope was able to walk down the aisle at church on Easter, making her family's dream come true.

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Many spinal cord injury rehabilitation programs are adaptations of adult models; ICSCI is unique because it has

programs and equipment specifically designed for children. There, the family found a team of professionals who made it clear they would do everything in their power to improve Penelope’s mobility and independence.

“They’re the most amazing people ever,” says Heather. “They’re such kind, ridiculously smart people, and you are in awe of the compassion they have. They’re very confident without ever being egotistical.”

At the time of her initial evaluation, Penelope spent most of her time lying on her back.

But physical therapist Amanda Oakley was optimistic that Penelope would respond well to activity-based restorative therapies (ABRT), the touchstone of ICSCI’s model of care.

Oakley says that when she first met Penelope, her family's wish was for Penelope to walk by Easter. That’s exactly what she did.

After a spinal cord injury, the delivery system that sends a message from the muscle to the Above: Penelope with physical therapist Amanda Oakley.

Right: Today, Penelope can walk with assistance. brain is interrupted. ABRT uses repetitive motion to stimulate neural cells to remember how to move, while encouraging the growth of new nervous “Penelope made her family's dream a reality when she walked system cells. Of course, when working with children, this hard down the aisle at church on Easter Sunday holding her mother’s work needs to be fun. hand,” Oakley reports.

“We try to incorporate play into every therapeutic intervention,” explains Oakley. Penelope loves baby dolls, so to encourage her to crawl, therapists would place a doll at the end of a mat. Once she got to the doll, Penelope would transition from the crawling position to standing to get the baby into the stroller and back to her mom. As Oakley explains, “This was key functional mobility, but for Penelope, she was simply playing.”

In a short time, a baby who could barely sit up had grown into a toddler who could walk with the support of a walker and pedal a bicycle like her big brother. She was released with a home rehabilitation program, and the family stayed in touch with Penelope’s care team. “Once a patient comes to the center, they’re always a patient,” says Oakley. “We are always a quick phone call or email away.”

Penelope’s twice“It takes a special person to deal with a spinal cord injury. The people at weekly therapy sessions included Kennedy Krieger were just amazing; everybody was so positive, so uplifting. walking on a partial body I was blown away by their knowledge, their skill, and their patience.” weight-supported ­ treadmill and —Heather Miller, Penelope’s mom weight-bearing exercises using a bracing system for her spine Heather says Penelope’s advances are evidence of the power of and legs. As she regained her strength, the bracing system was prayer combined with the skilled, knowledgeable, and patient reduced to promote independence and nervous system recovery. specialists at Kennedy Krieger.

Penelope returned to ICSCI in In the pool, therapists used the natural buoyancy of water to the fall to resume her therapy and build on the gains she’s made. improve Penelope’s walking and teach her important transfers, While there may be a day when she no longer needs Kennedy like how to go from sitting to standing.

Krieger, Heather quips that they’re going to be like the proverbial houseguest who sticks around. “We’d like to stay at Kennedy Back on Her Feet Krieger as long as they’ll have us,” she says. “We think they are Soon, Penelope was making friends. When she saw other the best of the best.” n Christianna McCausland children walking, that was exactly what she wanted to do, so she would “race” them as she walked with her walker. At home, her Visit potentialmag.kennedykrieger.org/Penelope to learn more about four-year-old brother Jackson encouraged her to walk and move Penelope’s story and the Institute's spinal cord injury program. through play and games. potentialmag.kennedykrieger.org

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Lifeline

Conquering complex medical conditions together: One family’s journey with Kennedy Krieger

Doctors once said Willie might never walk or talk. More than a decade later, nothing could be further from the truth, and the Bursons are grateful for every day.

Twelve-year-old Willie Burson loves reading, drawing, and playing golf. He’s bright, too, having recently been accepted to a talented youth program. Seeing him today, you’d never guess this was the same boy whom doctors once said might never walk or talk.

Willie’s medical conditions are complex. He was born with a form of hydrocephalus and a Chiari brain malformation, which required several surgeries. He was also diagnosed with low muscle 6

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tone, damage to his central nervous system, and a swallowing and feeding disorder.

His parents, Tom Burson and Caroline Morton Burson, knew they needed help from experts who could address Willie’s multiple problems. They brought Willie to Kennedy Krieger Institute, where a network of specialists could collaborate to address all aspects of Willie’s care.

“I want people to know there is hope out there. No matter what, you can’t lose sight that there is always hope.”

—Caroline Morton Burson

Guiding Families Through Complex Medical Care This collaborative team approach is a hallmark of care at the Institute. For patients like Willie who need treatment and therapy from multiple specialists, everyone uses a unified approach.

child’s care—it can be overwhelming to the family,” says Dr. Shapiro. This was certainly true for the Bursons, who had previously taken Willie to multiple specialists and hospitals, with no consistent treatment plan.

Willie’s care was overseen by Dr. Bruce Shapiro, neurodevelopmental pediatrician and director of neurodevelopmental disabilities training at Kennedy Krieger.

“Parents need someone to help prioritize and coordinate their

“In most other centers, families have to go to different places for care, and the specialists in one area don’t necessarily talk with another. Here, we address all of a child’s needs in a comprehensive coordinated fashion,” says Dr. Shapiro. potentialmag.kennedykrieger.org

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When Willie had difficulty in school, Dr. Shapiro wrote letters to his school so that Willie could receive the physical and occupational therapy he needed to succeed.

Having a picnic was once impossible because of Willie’s feeding disorder. After nearly 10 years of being fed through a tube, Willie can now eat on his own.

Peeling Back the Layers One of the biggest struggles for Willie was feeding. The basic act of eating, which seems instinctual, did not come naturally for Willie. While other babies were happily grasping bits of pasta and veggies and feeding themselves, Willie refused to take a bottle or eat, starting the day he was born. More to the point, he physically could not do it, having difficulty chewing, swallowing, and keeping food down. Weighing just 12 pounds at age one, he was neither thriving nor meeting developmental milestones. Doctors recommended a G-tube, and when Willie was 2½, he began an eight-week inpatient stay at the Institute’s Feeding Disorders Program.

This past spring, after nearly 10 years of being fed through a tube, Willie was able to eat without it. When the port for the feeding tube was removed from his abdomen, he was afraid at first, because it had been part of his life for so long, says Caroline. “It was his lifeline.”

Now, she says, he’s doing great. He’s healthy, he hangs out with friends, and he’s eating. These days, Willie has been known to eat salmon, lobster, and sushi. “He has a very sophisticated palate,” jokes Caroline.

“The contrast between what our fears were and the reality today couldn’t be sharper…We are extremely thankful every day.”

Willie’s progress in the feeding program was slow but sure. “It was like peeling back the layers of an onion,” recalls Caroline.

“We’d make a step forward and five steps back.”

Despite making progress, his problems were more complex than anything a short-term stay could fix. When he was discharged, his parents continued the feeding techniques at home. But Willie was vomiting and aspirating into his lungs.

Then, his lungs collapsed. “That was when we almost lost him,” Caroline says. She remembers that period as “a dark, dark time.” But through all of their struggles, Caroline says, Kennedy Krieger was there.

“I can honestly say, he would not be alive had it not been for Kennedy Krieger.”

Every Stage, Every Step of the Way Just like any child, Willie’s needs have changed as he’s grown.

But for kids like Willie, it’s important for parents to have an expert to help them figure out which problems need to be addressed first and which ones can wait. “Prioritization is just as important as coordination,” says Dr. Shapiro. “The picture changes as the child ages.”

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—Tom Burson For all the struggles he has endured, Willie has persevered in the face of adversity, with the dedication of his parents and his team at Kennedy Krieger, and his own determination. The Bursons recall vividly a moment years ago when Willie was in the hospital watching the scene in "Bambi" when the fawn falls down, and Willie said out loud, “Get up, Bambi, you can do it!” It was this positive attitude that helped him overcome so much and become the smart, inquisitive, healthy, and well-rounded child he is today.

“When Willie was two, we were very afraid of what was ahead,” recalls Tom. “The contrast between what our fears were and the reality today couldn’t be sharper…We are extremely thankful every day.”

Kennedy Krieger will continue to care for Willie as he grows older. “Kennedy Krieger is a part of Willie,” says Caroline. “We will never stop needing what Kennedy Krieger has.” n Kristina Rolfes Willie, age 4, working on his oral-motor skills during OT.

Caroline Morton Burson’s goal is to write a book about her experience raising a child with special needs. To read an excerpt of her work, visit potentialmag.kennedykrieger.org/Willie.

PROGRAM SPOTLIGHT RESEARCH FRONTIERS

Bennett Institute Physically Challenged Sports Program Bennett helps athletes with disabilities get off the sidelines and into the game Did you know that Kennedy Krieger has a wheelchair tennis team, a basketball team, and an ice hockey team? Some 20 sports make up the Bennett Institute Physically Challenged Sports Program at Kennedy Krieger, and directors Gerry and Gwena Herman expect the program to grow even more with the recent addition of a new adaptive sports park at the Greenspring campus.

Any child with a physical challenge can participate in the sports program, not just patients or former patients of Kennedy Krieger. In fact, most participants are not patients. Kids with physical challenges come from up to three hours away on a weekly basis to participate on the Bennett teams. The program plans to expand to adults in the next year, and will work with the International Center for Spinal Cord Injury (ICSCI) to become a Paralympic Sport Club. The ICSCI brings experience in adult quad rugby, handcycling, and wheelchair lacrosse, and the sports program will add adult sled hockey and wheelchair tennis.

The Bennett Institute was founded in 1989 by Kennedy Krieger physician and former Baltimore Orioles doctor Charles (Chick) Silberstein, who recruited the Hermans to run the program. It started with four children and focused mainly on motor development. The program rapidly expanded and now serves more than 100 children a week, ages 2 to 21.

For individuals with disabilities, participating in sports not only builds self-esteem, teamwork, and goal setting, but also serves as a great motivator > >

Young athletes can now play on the Institute’s new multi-purpose, state-of-the-art sports field, named after longtime Kennedy Krieger doctor Charles E. Silberstein. potentialmag.kennedykrieger.org

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to learn independence. In order to be on the ice hockey team, for example, players must be able to dress themselves.

“For some of the kids it’s a major obstacle to overcome,” explains Gerry Herman. “Because they do a fair amount of traveling without parents, they are responsible for their own equipment. That means attaching a golf bag with equipment to the back of their wheelchair and pulling it through the airport and to the rink.”

Over the years, several of their athletes have gone on to become professional athletes who make a living wheelchair racing. Tatyana McFadden, who started at Bennett when she was 6, has won all four major marathons—no one able-bodied or disabled has ever done that. Seven of Bennett’s athletes have gone on to compete in the Paralympics.

“That shows that our approach is working,” says Gerry Herman. “Kids learn that if they have the skill and the desire, they can get there.”

“By virtue of Gwena and Gerry Herman’s devotion and dedication, individuals with disabilities in the Mid-Atlantic region can now pursue dreams that were never before possible. Whereas previously they might have watched their sports heroes on TV, now they are the ones competing.”

–Dr. Charles E. Silberstein But the program isn’t just about competing at the highest level. For many, it’s about having fun, making friends, and being part of a team, Herman says. “We provide a continuum from learning a sport all the way up to national and international competition so that every kid has a goal to reach for.” n Kristina Rolfes To learn more about the Institute's adaptive sports programs, visit kennedykrieger.org/adaptive-sports.

The Bennett Institute, directed by Gwena and Gerry Herman (pictured above left), offers more than 20 sports for individuals with physical disabilities.

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RESEARCH FRONTIERS

The Neuroscience of

movement

How brain stimulation post-injury can affect learning and recovery Every movement you make—walking, reaching for your keys, or writing your name—is carefully orchestrated by hundreds of millions of neurons in the brain, with barely a conscious thought. But when a brain injury occurs, a person’s ability to move may become impaired. A once effortless movement may now seem impossible.

At the Motion Analysis Laboratory, investigators are studying how the brain learns movement patterns. Ultimately, they hope to find new interventions that can enhance movement after brain damage.

Some of the team’s most fascinating research involves non-invasive brain stimulation—applying mild electric current or magnetic pulses through the scalp to stimulate the brain. This type of brain stimulation—conducted either through electrodes placed on the skull or through a coil placed above the scalp that induces a magnetic field—can Stimulating the brain’s surface help speed up learning. (red) can induce changes in

activity deep into the brain (blue).

“If you stimulate part of the brain that is important for a learning process, you can make it a little more excitable and make it learn a little bit better,” explains lab director Amy Bastian.

This effect on learning could potentially apply to a broad range of conditions, from brain injury and stroke to behavioral disorders and psychiatric conditions.

What’s more, the team is discovering that reward circuitry in the brain—the brain’s so-called pleasure center—is important in

how well new movements can be learned and retained.

That’s the focus of biomedical engineer Vikram Chib’s research.

His studies have shown Investigators at the Motion Analysis Lab—Drs. Amy Bastian that mild and Vikram Chib—are studying ways to improve movement. electrical brain stimulation to the scalp can penetrate deep into the brain, to the area responsible for motivation, reward, and movement.

His research has also shown that there is an optimal amount of reward that motivates a person. If you give too big of a reward, people start to reframe the situation. Instead of thinking about how much they stand to gain, they start focusing on how much they could lose. As a result, they underperform, or “choke.”

So how does all of this translate to helping patients? “It turns out that different people value loss or reward in different ways,” explains Dr. Bastian. Some people are more motivated by rewards, while others are motivated by avoiding loss. An individualized reward structure could help motivate patients to learn new movements during rehabilitation. “If we give people the right rewards, we may improve how well they learn and retain a new movement.”

The team has already shown that electrical stimulation may be a valuable therapy tool to help people relearn how to walk following a stroke or other brain injury. Their findings suggest that the best rehabilitation may be a combination of physical therapy and brain stimulation. n Kristina Rolfes

To learn more about research initiatives at Kennedy Krieger, visit kennedykrieger.org/research. www.kennedykrieger.org

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IN MY OWN WORDS

Have Dreams, Discipline & Fun In My Own Words: Marc Russo

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magine going through your day and only hearing part of what your friends and teachers say. How would you feel if you missed the punch line to the joke? Or imagine someone calling your name in a crowded cafeteria but not knowing where that sound came from.

Two to three percent of the population doesn’t have to imagine these situations, because they live them. They have auditory processing disorder (APD), a disorder that occurs when the ears and brain don’t fully coordinate. Someone with APD has trouble understanding directions, often cannot hear himself, and may have speech difficulties. He might smile and nod but miss out on the joke, or he might not respond when you call his name.

I know, because that someone is me. Every day with APD is a struggle. But if I am going to accomplish my goals, I know I have to take responsibility for this disorder.

In second grade, my teacher insisted I had attention deficit hyperactivity disorder (ADHD), saying, “It’s the worst I’ve ever seen.” My parents knew that wasn’t right, so we turned to Kennedy Krieger Institute for help.

After a series of diagnostic tests, a Kennedy Krieger audiologist diagnosed me with APD—not ADHD. The staff at Kennedy Krieger designed a plan to help me succeed both in and out of the classroom. For example, the plan recommends I sit near the front of the class to see and hear my teachers more clearly. If teachers need to get my attention, the plan recommends they lightly tap me on the shoulder. And in some cases, the plan recommends teachers allow me extra time on tests.

Still, having this disorder doesn’t excuse me from anything. I dream of becoming a biomechanical engineer and building prosthetic limbs and artificial organs. To get to that point, I have to stay disciplined and focused.

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I take action by minimizing distractions and choosing my activities carefully. For example, I am on a swim team and swim four to six days a week.

Sometimes I cannot hear the coach giving directions, but it doesn’t stop me. I still work on improving as a swimmer and having fun competing.

I’m also one of the highest ranking officers in my Navy League Cadet Corps unit. I get to work with military officers, develop my leadership skills, and give orders to the newer cadets.

I learned one of my most important lessons while working with a Navy SEAL. He said, “The three keys to success are: have dreams, have discipline, and have fun.” At first, I didn’t understand what that meant. The more I thought about it, I realized those are words to live by.

If I am going to accomplish my dreams of becoming a biomechanical engineer and improving people’s lives, it will take self-discipline and focus. I have to remember not to doubt myself and that it takes time to meet my goals. Even though it’s a struggle to live with APD, it shapes who I am. I wouldn’t want it any other way.

Visit potentialmag.kennedykrieger.org/Marc to learn more

Marc Russo, 13, isn’t letting auditory processing disorder keep him from accomplishing his dreams.

NEWS BRIEFS & EVENTS

Our Holiday e-Cards Are Here!

Honor someone special this holiday season by sending a Kennedy Krieger e-card. Your gift will bring hope to kids at Kennedy Krieger, and a smile to your loved one. To create your customized e-card, visit kennedykrieger.org/holidayecards.

Thank you for making the 25th annual Festival of Trees a success. The event raised funds for the Institute’s patient care, special education, community, research, and training programs.

SAVE THE DATE April 26, 2015

Run, Walk, & Family Festival Oregon Ridge Park

The Cow Palace was transformed into a winter wonderland, featuring more than 700 spectacular holiday trees, wreaths, and gingerbread houses created by local designers. Nearly 50,000 attendees enjoyed live entertainment, holiday shopping, a silent auction, a children’s craft area, a carousel, “reindeer” pony rides, a train garden, and, of course, Santa.

ROAR FOR AUTISM K E NNE DY K R IE GE R INS T I T U T E

ROAR for Autism is a run, walk, and family festival dedicated to raising critically needed funds for autism research at Kennedy Krieger Institute. The family festival, featuring carnival games, live entertainment, the Wegmans Wellness Village, refreshments, and one of the area’s most impressive enclosed playgrounds, makes ROAR for Autism a great event for the whole family.

For more information, please call 443-923-7300 or visit ROARforAutism.org.

Have a great event idea?

Are you interested in hosting an event to benefit Kennedy Krieger Institute? From bake sales and dinner parties to golf tournaments and 5K runs, fundraising events come in all shapes and sizes.

We at Kennedy Krieger are fortunate to have families, businesses, and organizations throughout the country actively supporting the Institute by coordinating their own fundraising events. These events are initiated, managed, and executed entirely by volunteers, and benefit the 20,000 children and families who come through our doors each year.

To learn more about organizing a fundraiser, visit events.kennedykrieger.org or call 443-923-7300.

To learn more, get involved, and stay connected, visit kennedykrieger.org/connect.

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Give the Gift of Potential By donating to Kennedy Krieger, you can make a difference in the lives of children with developmental disorders and injuries. Your donation enables us to pursue groundbreaking research, provide leading-edge treatment and therapies, and offer high-quality education and community programs for children with special needs to help them achieve their potential. Your gift truly transforms lives.

No matter what your age or financial resources, you can support Kennedy Krieger. There are so many ways to give!

• Give monthly as a Partner in Potential • Donate in honor or memory of someone • Set up a charitable gift annuity or other life income gift • Include Kennedy Krieger in your will as a charitable bequest • Give through your retirement plan or life insurance policy • Attend one of our special events, or host one of your own To find out more, contact the Kennedy Krieger Office of Development at 1-800-HELP-KIDS or visit helpkids.kennedykrieger.org.

Heather Miller and daughter Penelope

Your Support is the Key to Unlocking a Child's Potential “I am happy to give time and effort to Kennedy Krieger because it affirms in so many ways that our community has the capacity to dramatically change lives. The boundless caring by staff and volunteers makes real miracles happen day after day.”

— Brenda Jews, Women's Initiative Network of Kennedy Krieger Institute