Potential Spring/Summer 2016

potential A publication of Kennedy Krieger Institute

Tiny Survivor

Thrives

After Heartbreaking Injuries

Budding Actor with Brain Injury is Ready for His Encore Learning to ‘Speak’ Through Eye Gaze Research: Unlocking the Mysteries of the Brain

We are all born with great

potential

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

A publication of Kennedy Krieger Institute Volume 16, No. 1 • Summer 2016

Inspiring Potential Cards for Corey A 10-year-old’s quest to change the world, inspired by his cousin with autism.

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FEATURES Beyond Words After traveling halfway around the world to Kennedy Krieger, Sariyya learns to ‘speak’ through innovative eye gaze system.

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Ready for His Encore Brain injury won’t keep this budding actor from his Broadway dream.

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Every day, children and families reap the benefits of our decades-long, relentless study of the inner workings of the developing brain. Our clinicians and educators are on the front lines working with patients and students.

Behind the scenes, our neuroscientists and researchers are discovering the treatments and therapies of tomorrow.

A Tiny Survivor Fights Back 3-year-old Sanayah is thriving, despite spinal cord and traumatic brain injuries sustained in a heartbreaking car crash.

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In this issue, you’ll read about 3-year-old Sanayah, whose parents were devastated when their little girl was seriously injured in a car accident. Now, Sanayah’s brain is healing, and she is undergoing intensive rehabilitation for her spinal cord injury.

RESEARCH Frontiers

Letter from our

President

Halfway across the globe, Sariyya, from Bangladesh, was born with multiple disabilities that left her unable to speak. She had no means to communicate, and no school would accept her. Her family traveled thousands of miles to Kennedy Krieger Institute to consult with experts from multiple specialties. Among other resources, our team provided an innovative eye gaze system that enables Sariyya to communicate, and she is now in school learning with her peers.

Eighteen-year-old Greg, from Virginia, was an aspiring actor in musical theater when his plans were interrupted by a sudden brain injury. Through intensive therapy and medical care led by experts in brain injury rehabilitation, our team is focused on helping him achieve his goals and get back to the stage.

This issue of Potential highlights only a few of the stories of life-changing care and scientific discovery made possible by supporters like you. Together, we will continue to ensure ever-promising futures for children and families in need. Thank you for your support.

Sincerely, Gary W. Goldstein, MD President & CEO

Programs Spotlight Comprehensive Programs and Services to Help Children Unlock Their Potential

Unlocking the Mysteries of the Brain Kennedy Krieger researchers advance scientific discovery through collaborative efforts.

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IN MY Own Words Mike Fritschner: When All Seems Lost, Hope An unimaginable surfing injury left him paralyzed at age 15.

He thought he had lost everything, until he gained back even more.

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News briefs & Events Kennedy Krieger in the news and upcoming Institute events. 13

potential Editor

Art Director

Contributing Editor

Designer

Kristina Rolfes

Amy Mallik

Mark Allen

Erin Parsons

Contributing Writers

Director of Marketing

Proofreader

Media Inquiries

Mike Fritschner and Christianna McCausland

Lisa Nickerson

Nina K. Pettis

Becky Melvin

Creative Services manager

Publication Inquiries

Sarah Mooney

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

Photography

Bill Schilling, Robin Sommer, and Clark Vandergrift For appointments and referrals, visit KennedyKrieger.org/PatientCare or call 888-554-2080.

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. Kennedy Krieger Institute provides care that preserves cultural, psychosocial, spiritual, and personal values, beliefs, and preferences. Care is free from discrimination based on age, race, ethnicity, religion, culture, language, physical or mental disability, socioeconomic status, sex, sexual orientation, and gender identity or expression including transgender. We encourage patients and families to become active partners in their care by asking questions, seeking resources, and advocating for the services and support they need.

To update your contact or mailing information email PotentialMag@KennedyKrieger.org. 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.

© 2016, Kennedy Krieger Institute

On the cover: 3-year-old patient Sanayah Pineiro.

For more inspiring stories, news, and updates, visit PotentialMag.KennedyKrieger.org.

Inspiring potential

Cards for Corey

A 10-year-old’s quest to change the world

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t started as a classwork assignment from Alex Gwiazda’s teacher: come up with an idea for how to change the world.

Alex immediately thought of his cousin Corey, 8, who has autism, and how he could make a difference for him and others with autism. “Our assignment was just to write about the idea,” says Alex, 10, “but I wanted to do mine in real life.”

His idea was to raise money for autism research by designing and selling cards with his artwork in honor of his cousin.

His parents told him the best place to donate for autism research was Kennedy Krieger, where Corey was evaluated several years ago.

Inspired by his cousin and best bud Corey, who has autism, Alex designs and sells cards to raise money for autism research.

Alex chose to draw a bluebird on his first card because blue is the color for Autism Awareness Month. He sold cards at a community yard sale Alex reads a story to his cousin Corey. last summer and to family, friends of his parents, and neighbors. So far he has raised $197 for autism research at Kennedy Krieger. As a thank you, he received a silver keychain from Kennedy Krieger, engraved with “Unlocking Potential,” which he keeps on a hook in his bedroom so he can see it every day.

Recently, Corey’s 5-year-old sister was also diagnosed with autism, so Alex is even more determined to help. He hopes to make a series of cards, and someday he hopes to help in an even bigger way: “I want to do my own autism research when I grow up and learn how to help kids that have it.”

“If everybody tried to do Corey and Alex have a special something good to change the bond, and when the two are world, then the world would be a together, Corey says he is in his much better place,” says Alex. “safe place.” “Corey is one of We agree. Thank you for helping my best friends, and I want to to change the world, Alex!

Corey and Alex share many of the same interests. help him because I love him,” n Kristina Rolfes explains Alex. “We have a lot To learn more about autism research and services at of the same interests, like Legos, building models, and history, especially World War II history, tanks, and airplanes.”

Kennedy Krieger Institute and to support Alex’s cause, visit PotentialMag.KennedyKrieger.org/Alex.

PotentialMag.KennedyKrieger.org

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Beyond Words O

n the outskirts of Dhaka, the capital of Bangladesh, you can hear the laughter and voices of schoolchildren bubbling through the open windows. One child, 7-year-old Sariyya, is quiet. Though no sound leaves her lips, she is communicating with her teacher. In front of her, on the tray of her wheelchair, lies a book of pictures.

Sariyya’s gaze shifts from her teacher to the book before her, and back to her teacher. The teacher looks at the image of the cup in the book, and asks, “Sariyya, are you thirsty?” Sariyya’s gaze moves to the word “yes.”

It is a simple, yet ingenious eye-gaze communication system designed specifically for Sariyya by a speechlanguage pathologist at Kennedy Krieger Institute.

The family traveled halfway around the world the previous summer to seek help with their daughter’s speech, eating, growth, and overall development.

Sariyya was born with multiple disabilities into a society that does not fully include or accept individuals with disabilities.

From Bangladesh to Baltimore, Sariyya learns to ‘speak’ through eye gaze system.

No school in the area had the resources or expertise to meet her special needs. So her parents, Rizwana and Abdus, started the ALC Foundation in Bangladesh and opened a school of their own so that Sariyya and other children with developmental disabilities could learn. Thanks to the dedication of her parents and the Sariyya with her team at team at Kennedy Kennedy Krieger. L to R: Mary Boyle, Chad Wanex, Kelly Krieger who gave Masterson, and Kristin Stubbs. her the means to communicate, the world of education and opportunity has opened for Sariyya.

Communication Without Boundaries The family had been to many doctors and therapists over the years, unable to find a center that could meet all of Sariyya’s needs. Their family doctor recommended Kennedy Krieger Institute. The Institute’s international office coordinated the multiple evaluations, therapies, and follow-up appointments Sariyya would need during her visit to the United States.

Speech-language pathologist Mary Boyle assessed Sariyya’s speech and communication skills. She determined that Sariyya was very smart and could understand language, but she lacked the motor control and coordination to talk, use sign language, point to pictures, or activate switches. But what she could do, Boyle determined, was communicate through eye gaze.

Boyle developed a portable, picture book communication system, with boards arranged by topic for personal (getting dressed, pain, feelings, family members), social (favorite

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activities), and academic (letters, vocabulary words, etc.). Boyle taught her how to gaze, first at the person she was communicating with, then at a specific category or picture on her board. For the first time in her life, she could communicate. Sariyya said “I love you” to her parents for the first time with her new system.

“When a child can say, ‘I need this’ or ‘I hurt,’ and it is recognized, that is a major quality of life improvement,” says Boyle. “This is why I do

what I do. We were able to provide Sariyya’s family a means to know their child better, and that is a gift I treasure.”

“Never had anyone communicated with Sariyya so warmly,” said Rizwana, Sariyya’s mother. “She loved that warmness, and we loved the way she was treated.” Unlike in her home country, people in Baltimore welcomed Sariyya wherever she went, she recalls.

Freedom to Play Because of her motor impairment, Sariyya had never been able to play with toys as other children could. Children learn motor and social skills through play, so she had been missing out on important developmental opportunities. Occupational therapist Kristin Stubbs worked with Sariyya by modifying toys and working on play skills. Sariyya loves fairies, so Stubbs made a toy fairy for her that she could strap to her hand.

Though she is unable to grasp toys or control her movements, Sariyya can now play fairies with these specially modified toys made by her occupational therapist.

Sariyya’s parents were very worried about her growth and nutrition. Her mother had to spend an inordinate amount of time feeding her, because Sariyya lacked the motor skills to chew and swallow. Occupational therapist Donna Reigstad made recommendations, including showing Sariyya’s parents feeding techniques, using a special cup and spoon, and thickening liquids to keep them from falling out of Sariyya’s mouth.

Ultimately, specialists in the Feeding Disorders Unit recommended a supplemental gastronomy tube, which delivers nutrition directly to the stomach, thus improving Sariyya’s strength and freeing up her time for While at Kennedy Krieger, more play and learning.

Sariyya learned to communicate

through a simple, yet ingenious Assistive technology eye gaze system that she now specialist Lauren Tooley uses at the school her family provided a voicefounded in Bangladesh. output system using a computerized eye-gaze system, which she could use in addition to her picture book gaze system. The laptoplike device is equipped with a special built-in camera and sophisticated software that tracks where Sariyya is looking on the screen. By looking at particular words or pictures, she can generate speech.

On Sariyya’s last day at the Institute, the many specialists who worked with her during her visit gathered around and asked if there was anything else she needed. Sariyya shifted her gaze from the team to her eye-gaze system, which spoke her one last request before departing: “Can I have a hug?” n Kristina Rolfes To learn more about the programs that helped Sariyya, visit PotentialMag.KennedyKrieger.org/Sariyya.

With her new eye gaze system, Sariyya was able to say ‘I love you’ to her parents for the first time.

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Brain injury won’t keep this budding actor from his Broadway dream.

Greg Kenney dreamed of a career on Broadway and has spent much of his youth on stage.

By age 17, he had performed in more than 60 musicals. He produced the children’s musical at his church, served on the board of directors for the county arts program, and wrote reviews for a regional theater website. He was senior class president, and planned to attend the music theater program at Elon University. But two weeks into his senior year of high school, his sure path to stardom came to a perilous halt.

reg had been training for weeks for the 2015 Rock ‘N’ Roll Virginia Beach Half Marathon and seemed in perfect health.

But when Greg was within a few hundred feet of the finish line, he went into cardiac arrest and collapsed.

Greg seemed in perfect health while training for the Rock ‘N’ Roll Half Marathon.

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PotentialMag.KennedyKrieger.org

Running a few paces ahead of him in the race was Adrianna Amarillo, a medical resident. When she heard someone call for medical help, she turned around, ran to Greg, and performed CPR until a medical team arrived to airlift him to the hospital. But because of the prolonged lack of oxygen to his brain, Greg sustained a severe brain injury.

Later that evening, Amarillo went to work and saw Greg in her ICU. Greg’s mother, Stephanie Watson, says that Amarillo had found an angel pendant on the road a few months earlier. After someone said “you must be his guardian angel,” she remembered the pendant and gave it to Greg.

After being treated at a cardiac and acute care hospital, Greg was transferred to Kennedy Krieger’s inpatient Brain Injury Rehabilitation Unit, which brings together a team of specialists from multiple disciplines to help patients recover after brain injury. When he arrived, he was in a coma-like state, unable to move, speak, eat, or track with his eyes.

Music and acting are never far from his mind. When asked to think of a really hard word during therapy, Greg responded with “supercalifragilisticexpialidocious” from the musical “Mary Poppins.” His therapists incorporate music and movement into his therapies to give him an extra boost of motivation.

“Greg’s goal is to get back on the stage singing and dancing, and we would all love to get him as close to that as we can,” says Lynnley Moore, Greg’s speech-language pathologist.

They are working on singing lyrics to some of Greg’s favorite songs and practicing play scripts to help improve Greg’s breath support and speech.

His inpatient team at Kennedy Krieger implemented a treatment plan, and Greg’s family saw him slowly progress. Little by little, he began showing signs of cognition. “I could tell from the sparkle and the look in his eye that he was back, that he was understanding and recognizing us,” recalls his mom. Then he wiggled his finger. He learned to put his mouth together like a kiss and move his eyebrows. They were small signs, but monumental moments for his family.

He spent his 18th birthday and Christmas in Kennedy Krieger’s inpatient unit. By January, he was stable enough to move to the Specialized Transition Program (STP) at Kennedy Krieger, a day program where he could continue receiving intensive daily therapy and medical care without hospitalization.

At STP, Greg receives speech, physical, and occupational therapies, and works with a neuropsychologist to help him cope with the changes caused by his injury. He participates in a life skills group with peers, works on school assignments with a teacher, and eats lunch with others in the program.

“Kennedy Krieger is like a symphony in motion, with all of the different services cooperating together to work as a team to heal Greg.”

–Stephanie Watson, Greg’s mom

During a recent visit home, Greg was thrilled to see his friends during a service at his school’s chapel. “Being back in that environment was just overjoying to him,” says his mom, “and it was wonderful for me to see all the love and support for him.”

Although Greg has limited mobility on his left side, he is making steady gains. He’s learning to get around in a power wheelchair and can walk short distances with a gait trainer. He is learning to eat and drink, and can now say a few words, though he has difficulty coordinating the muscles in his mouth. He has also learned to use a communication device. The team continues to work on his cognitive objectives and coping goals, and will help the family with educational and community resources after discharge.

Though it’s been a long and difficult journey, the family’s strong faith has sustained them. “Greg has a special purpose,” his mom says. “His story is still being written—we don’t know what it’s going to be, but we know it’s going to be amazing.

He is going to do even bigger things than what he planned on doing.” n Kristina Rolfes To learn more about the programs that helped Greg, visit PotentialMag.KennedyKrieger.org/Greg.

Greg’s therapists incorporate music and movement into his therapies for extra motivation. Left: speech-language pathologist Lynnley Moore; Above: physical therapist Kate Hill and trainee Amy Albano.

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A Tiny Survivor Fights Back 3-year-old Sanayah is thriving despite spinal cord and traumatic brain injuries.

No one needs to tell Eric Pineiro that life can change in an instant. That moment for him was June 20, 2015. He was driving his wife and 2-year-old daughter, Sanayah, home from the mall when a drunk driver swerved into their lane.

The impact killed a passenger in the oncoming vehicle, and sent Sanayah’s mother, Nandraine, to Shock Trauma, and Sanayah and her father to the hospital. The crash left Sanayah with a severe spinal cord injury, brain hemorrhage, and concussion. Although her spine was intact, the swelling—and the damage to the nerves that followed—left her paralyzed from the chest down.

The weeks that followed were difficult. Eric, whose condition had stabilized, spent long, sleepless nights with his daughter hoping she would survive, while Nandraine struggled to recover from her own injuries and the anxiety of being separated from her daughter. When Sanayah’s condition stabilized, doctors recommended intensive rehabilitation as soon as possible.

Based on his research and the testimonials of other families, the choice of Kennedy Krieger Institute was clear to Eric.

“I didn’t know what was going to happen with my daughter,” recalls Eric. But once he met the team at Kennedy Krieger, he says, “I could finally feel comfortable and know that my daughter was in the best care. They were very informative, very gracious, very understanding, kind. They truly love what they do and it shows.”

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anayah’s case was complex. Not only did she have a spinal cord injury, she also had a traumatic brain injury and respiratory complications. Fortunately, she had a team of experts from the Institute’s pediatric Brain Injury Rehabilitation Program and the International Center for Spinal Cord Injury (ICSCI) to address all aspects of her care.

“At Kennedy Krieger, we have this huge team of people working together to attack each and every problem from so many different dimensions,” says Michelle Melicosta, MD, who treated Sanayah on the inpatient unit.

Despite the severity of her injuries, it was Sanayah’s age that was perhaps the most challenging issue. She had the stubbornness one would expect of any toddler and a limited ability to express her emotions or understand her medical situation. Sanayah had undergone significant trauma from the accident itself and the necessary interventions that followed. And it was hard for the entire family to be separated—Nandraine remained in the hospital, while Eric stayed with Sanayah.

Understandably, Sanayah was anxious, yet it was critical that she participate in the therapies needed for a successful rehabilitation.

“I have a beautiful, smart little girl. The fact that she can’t walk—if that’s the only thing I lost in this accident, I consider myself to be very lucky.”

“One of the real advantages at Kennedy –Eric Pineiro, Sanayah’s Dad Krieger, because we have such an excellent interdisciplinary approach, is that both the behavioral psychology and child life staff worked really closely with Sanayah,” says Dr. Melicosta. Child life therapists helped Sanayah adjust to being in the hospital and away from her mother, while the behavioral psychology staff taught her, at an age-appropriate level, coping mechanisms she will need moving forward.

Janet Dean, pediatric nurse practitioner at the ICSCI, says they push their patients harder than other centers might think a child can be pushed—up to five hours of therapy a day. But the experienced therapists are adept at making the hard work of therapy seem like play.

(left) Sanayah shares a tender moment with Dad during her inpatient stay.

FPO (right) Occupational therapist Shannon Corbey making the hard work of therapy fun for Sanayah. (below left) Nurse practitioner Janet Dean checks Sanayah’s deep tendon reflexes.

Children like Sanayah have the advantage of plasticity in their spinal cord and central nervous system because they’re still growing and developing, explains Dean. “By doing intensive activity-based restorative therapy (ABRT) with functional electrical stimulation, we are working to improve her function and at the same time, stimulate recovery of her nervous system.

At the very least, the use of functional electrical stimulation helps to maintain her muscle mass and improve her muscle strength.

We’re keeping her healthy, so if a cure or significant treatment comes down the pike in the future, she’s going to benefit.”

Recovery from an injury like Sanayah’s is a marathon, not a sprint. But Kennedy Krieger will be there with medical expertise, therapy, and support every moment along the way. Eric wouldn’t have it any other way, even though he drives over an hour each way for her treatments.

“My daughter used to flap like a bird. That was pretty much all she had,” he recalls. “When she left Kennedy Krieger she could use her fingers, move her arms, pick up things, and write. She would laugh when she was able to do things because it was special for her to go from not moving at all to picking up things with her hands. My daughter was a totally different child than when she came in.”

Sanayah is home now, and very active. She has her fish, “Happy,” whom she cares for, and she enjoys singing and drawing. She’s in school and, after a brief bout of short-term memory loss, has relearned her ABCs and can count to 18. Eric describes her as a bright, jovial child who can be a little sassy at times.

He and his wife, Nandraine, who is now home after recovering from her injuries, are happy with Sanayah’s recovery. “Even though she can’t walk right now, I never give up hope. I have a beautiful, smart little girl. The fact that she can’t walk—if that’s the only thing I lost in this accident, I consider myself to be very lucky.” n Christianna McCausland To learn more about the programs that helped Sanayah, visit PotentialMag.KennedyKrieger.org/Sanayah.

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research frontiers

Unlocking the Mysteries of the Brain Kennedy Krieger researchers advance scientific discovery through collaborative efforts.

We’re at the dawn of a new frontier in neuroscience. With advances in neuroimaging technology and genetic analyses, discoveries of how the brain develops and functions are occurring at an accelerating pace. Functional magnetic resonance imaging provides a window into the brain, giving scientists important clues about how the connectivity of neurons, brain structure, and chemical makeup relate to the symptoms of neurological disorders. We can pinpoint regions of the brain that are activated during specific behaviors, like impulsivity, motivation, and attentiveness—or certain feelings, such as anger or anxiousness.

Led by newly appointed Chief Science Officer Amy Bastian, PhD, our scientists are collaborating to solve some of the most puzzling questions about childhood neurological disorders, tackling the problems from every angle.

“Working with such a talented, diverse team of scientists creates an exceptionally stimulating and inspirational research environment.”

Amy J. Bastian, PhD Chief Science Officer of Kennedy Krieger Institute, and Director of the Motion Analysis Lab In addition to directing research priorities at the Institute, Dr. Bastian is studying how the brain controls motor movement and learns new patterns, which can play an important role in recovery for patients with brain injuries. Her research uses computerized movement tracking techniques, non-invasive brain stimulation, novel devices, and robotics to control walking and reaching movements. KennedyKrieger.org/Bastian

“Applying what we’ve learned from brain imaging and behavioral studies, we are pursuing novel interventions for children with autism and ADHD.” Stewart Mostofsky, MD Research Scientist and Director of the Center for Neurodevelopmental and Imaging Research at Kennedy Krieger Institute Dr. Mostofsky is studying the neurobiology of ADHD and autism through brain imaging and behavioral assessment to determine how these disorders manifest in the brain, and how these findings can be applied to improving diagnosis and developing innovative intervention approaches. KennedyKrieger.org/Mostofsky 8

“One in 10 children is diagnosed with ADHD. We want to understand how ADHD emerges and unfolds, so we can provide optimal interventions.”

E. Mark Mahone, PhD, ABPP Child Neuropsychologist, Research Scientist, and Director of the Department of Neuropsychology at Kennedy Krieger Institute

Dr. Mahone is investigating the early development of ADHD by examining brain-behavior relationships in preschool age children. He is conducting a first-of-its kind longitudinal neuroimaging study of children with and without ADHD, providing insights about how brain anatomy, connectivity, and function influence behavior. KennedyKrieger.org/Mahone

“There are many unanswered questions about concussion—we’re working to provide evidence for how to best treat children and decrease the likelihood of long-term problems.”

Stacy Suskauer, MD Research Scientist, Director of Brain Injury Rehabilitation Programs, and Director of the Brain Injury Clinical Research Center at Kennedy Krieger Institute

Dr. Suskauer is researching potential biomarkers for concussion, and more severe brain injuries, to inform treatment and predict recovery. She is also working with the Centers for Disease Control and Prevention to develop standard national guidelines for the clinical evaluation and care of youth with concussion. KennedyKrieger.org/Suskauer

“It’s exciting to know that we can reverse the negative effects of traumatic stress on children.”

Joan Kaufman, PhD Director of Research at the Center for Child and Family Traumatic Stress at Kennedy Krieger Institute

Dr. Kaufman is studying how abuse, neglect, and other experiences of traumatic stress affect genes and brain functioning, leading to an increased risk for not only mental health disorders, but also physical health problems. Her team is furthering the understanding of these mechanisms and working to identify novel treatments.

KennedyKrieger.org/Kaufman

Your gift makes tomorrow’s discoveries possible. To support our innovative research, visit KennedyKrieger.org/Innovation.

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Programs Spotlight

Comprehensive Programs and Services to Help Children Unlock Their Potential

When a child has a brain disorder or injury, it can affect almost every area of life—learning, behavior, cognition, movement, communication—even everyday functions like eating and sleeping. Children with complex disorders and injuries need multi-faceted care. By bringing together medicine, therapy, education, science, and advocacy, Kennedy Krieger’s compassionate and committed staff provide care and support from every angle—giving children with neurological disorders the very best chance at unlocking their potential.

Research and Training Our scientists are advancing the understanding, prevention, and treatment of neurological disorders and injuries, and training tomorrow’s leaders in the field.

944

T rai n ees

in 14 disciplines

Patient Care Behind every child’s milestone or recovery is a team of compassionate, committed specialists who work together to guide patients and families through all stages of care.

20,000+

Patients

Served

FROM

45

states

&

9 countries

each year

FROM

125+ Faculty

50 States

50+

42

Countries

disorders

75+

& treated

Programs

D iverse

diagnosed

10

&

PotentialMag.KennedyKrieger.org

Clinical

& Research Scientists

(in 2015)

Our areas of specialization include: • Autism spectrum disorders • Behavioral disorders • Bone disorders • Brain injury & concussion • Cerebral palsy • Communication disorders

• Developmental disorders • Down syndrome • Feeding disorders • Learning disorders • Muscular dystrophy • Rehabilitation

• Sleep disorders • Spina bifida • Spinal cord injury and paralysis • Sturge-Weber syndrome For a complete listing of programs and services, visit KennedyKrieger.org.

Community Programs Kennedy Krieger Institute provides access to resources and services beyond the clinic and classroom to help people with disabilities enjoy success in community life.

360 662

Special Education Our life-changing educational programs are designed to unlock the potential inside our students, and pave the way for a life full of promise.

Each year:

Our school Programs serve

525+ students from 15 Maryland counties, as well as Pennsylvania and Washington, D.C.

teachers in our 8 school programs

(in 2015)

108+ Community T rai n i n gs

conducted by the Maryland Center for Developmental Disabilities

Children with special needs placed in loving foster or respite care since 1987

21

Adaptive sports programs for children & adults

Consulting to public schools in 3 states STUDENT REFERRALS

F RO M

100+

Patients & families received legal help from Project HEAL

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countries 11

In My own words

When All Seems Lost,

Hope

An unimaginable surfing injury left Mike Fritschner paralyzed at age 15.

He thought he had lost everything, until he gained back even more.

I

was surfing with my dad on a family vacation in Hawaii in 2006. I stood up on a wave and felt a small pop in my back, which began to hurt. I paddled in and tried to stretch my back, but it just kept hurting more. I felt my legs getting really tired. I walked a few feet and collapsed. That was the last time I was really able to feel my legs. I was 15.

I experienced a rare injury called surfer’s myelopathy. While I was surfing and turning to look back at the wave, my back hyperextended, which cut the flow of blood to my spine, causing some nerves to die.

My plan had been to become a professional quarterback. I told my dad that without my athletic ability, I wasn’t anything. He said that I was much more than an athlete and that we would get through this together. At that moment, I knew I would never use being in a wheelchair as an excuse not to do something or let it define who I am.

The moment I entered the International Center for Spinal Cord Injury at Kennedy Krieger, I felt such hope and such power. The team shared my belief that if I work hard every day, I will walk again. Kennedy Krieger was the perfect match for my “I can—I will” determination.

Their philosophy was: first, let’s see if you can stand and walk; if you can’t do that, sit down and move your legs; if you can’t do that, lie down and move your legs; if you can’t do that, think about moving your legs. We focused not on my limitations, but on the things I could do.

(above) Mike with his mom, Candice Fritschner, and his girlfriend, Natalia Vargova, at the Los Angeles Marathon. (right) Representing Team Kennedy Krieger at the Baltimore Running Festival.

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In My Own Words: Mike Fritschner

We have a choice to either focus on the things we don’t have and the things we can’t control, or on all the amazing things we can do. Making that choice each morning defines who we are.

I have been challenged by Kennedy Krieger’s talented therapists, encouraged by its exceptional doctors and nurses, and inspired by its other patients. After years of using the therapy techniques and technology and expertise at the Institute, I can feel and move all the way down to my mid-thigh. I can pick things up off the ground. I can do a sit up. It’s amazing.

Knowing my passion for athletics, my therapist focused on getting me into an adaptive sport and loaned me the handcycle. For the first time since my injury, I felt that competitive drive again. I went on to complete the Baltimore and Los Angeles marathons as part of Team Kennedy Krieger, raising more than $20,000 to help others with spinal cord injuries.

Mike Fritschner graduating I was honored to be able to from USC in 2013. give back, but this was nothing compared to what Kennedy Krieger has given to me and my family. Kennedy Krieger gave me hope. And you can’t put a price on that.

To learn more about the programs that helped Mike, visit PotentialMag.KennedyKrieger.org/Mike.

“We have a choice to either focus on the things [we] can’t control, or on all the amazing things we can do. Making that choice each morning defines who we are.”

–Mike Fritschner

news briefs & events

Visit Our New HelpKids Website!

In the National Spotlight Lorenzo’s Oil Could Not Cure Lorenzo, But Newborn Screening is Expected to Save Others From His Fate A dream comes true for the late Dr. Hugo Moser after his widow and research partner, Ann Moser, carries forward his mission to add ALD to the newborn screening panel.

To read the article, visit KennedyKrieger.org/Oil.

10 Things You Need To Know About Autism Dr. Rebecca Landa, Director of the Center for Autism and Related Disorders at Kennedy Krieger Institute, shares 10 facts about autism that should be on every parent’s radar.

Want to read more inspiring stories and discover the impact of your support? Visit the Office of Philanthropy’s newly revamped, mobile-friendly website at HelpKids.KennedyKrieger.org. Now it’s easier to stay up to date on our fundraising events, learn about ways to give and volunteer, and read the amazing stories of patients, students, and donors. Check it out today, and share a story about how the Institute has impacted you!

To read the article, visit KennedyKrieger.org/Parents.

A Peek at Brain Connections May Reveal Attention Deficits Dr. Mark Mahone, neuropsychologist, research scientist, and director of the Neuropsychology Department at Kennedy Krieger, discusses ADHD as a brain disorder, not a behavioral problem.

To read the article, visit KennedyKrieger.org/NPR.

Santa Needs Helpers!

November 25 – 27, 2016 Maryland State Fairgrounds Plans are quickly coming together for Kennedy Krieger Institute’s Festival of Trees, the largest holiday-themed festival of its kind on the East Coast.

We are looking for organizations and individuals interested in: • Sponsoring the event • Volunteering at the event • Entertaining the crowds from onstage • Designing a tree, wreath, or gingerbread house for sale

•D onating an item for the silent auction • Setting up a Happy Holidays Fund page to help families in need • Providing shopping opportunities as a vendor

To learn more, call 443-923-7300 or visit FestivalOfTrees.KennedyKrieger.org.

To learn more, get involved, and stay connected, visit KennedyKrieger.org/Connect.

Join Team Kennedy Krieger at the Baltimore Running Festival October 15, 2016 • M&T Bank Stadium As a member of the Kennedy Krieger Institute charity team, you can register for FREE by committing to raise funds for the Institute and our spinal cord injury program.

KennedyKrieger.org/BaltimoreMarathon

Exceptional Volunteers Honored at Annual Society Reception Congratulations to the following volunteers, who were recognized with awards at the 20th annual Kennedy Krieger Society reception in June.

Sara Orthwein: The Henry A. Rosenberg, Jr. Community Spirit Award – Sara is an active member of the Women’s Initiative Network (WIN) for Kennedy Krieger Institute. For the past two years, Sara has organized and attended monthly volunteer days for WIN members to work with the amazing children at Kennedy Krieger during recreational therapy.

Jason Nicholson and Danielle White: The Institute’s Award for Volunteerism – Jason is a dedicated volunteer who has spent every Thanksgiving weekend for the past 14 years volunteering at the Festival of Trees. Danielle has been a loyal volunteer for the past five years at events including Festival of Trees, ROAR for Kids, and the Baltimore Running Festival.

PotentialMag.KennedyKrieger.org

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PAID

PERMIT #7157 BALTIMORE MD

707 North Broadway Baltimore, Maryland 21205

Help us find the keys to unlock her potential When you give to Kennedy Krieger Institute, you’re helping us find the keys to unlock the potential of kids like Sanayah. Your gift will support groundbreaking research that brings hope, and innovative care that transforms lives. Thank you so much for your support!

Donate today using the return envelope inside this issue, or online at KennedyKrieger.org/PS16.

Sanayah, age 3, with her dad, Eric.

Read Sanayah’s story on page 6.

Construction to begin on Harry and Jeanette Weinberg Outpatient Center In Fall 2016, Kennedy Krieger will break ground on a new outpatient building, which will be adjacent to the Institute’s existing outpatient center at 801 N. Broadway. The new, expanded outpatient center will enable the Institute to meet the growing need for its services and provide children with comprehensive outpatient programs—integrating all components of developmental health—in one location. The expanded outpatient center will provide individualized care for children with cognitive, behavioral, and affective disorders, as well as motor and physical impairments.

Rendering of the new building.

Be part of Kennedy Krieger’s growth! Visit KennedyKrieger.org/Capital to give online, or use the enclosed envelope.