PUBS Progress Report: Kennedy Krieger Institute

FINDING THE KEYS

With your support, Kennedy Krieger Institute brings together researchers, scientists, physicians, therapists, educators, and advocates to find the keys our patients and students need to unlock their potential and succeed in family, school, and community life.

To learn more about the Institute’s patient care, research, professional training, special education, and community programs, visit KennedyKrieger.org.

PATIENT CARE CARE PATIENT An interdisciplinary team of specialists works together to evaluate, diagnose, and create individualized treatment plans to guide patients and families throughout all stages of care.

RESEARCH & & TRAINING TRAINING RESEARCH Our innovative research and professional training programs are leading the effort to advance understanding, prevention, and treatment of disorders and injuries of the brain, spinal cord, and musculoskeletal system.

SPECIAL EDUCATION EDUCATION SPECIAL We offer school-based, hospital-based, and recreational programs designed to unlock the potential inside our students, and share our knowledge with educators everywhere through training and consulting services.

COMMUNITY INITIATIVES INITIATIVES COMMUNITY We are committed to helping people with developmental disabilities achieve their potential and enjoy success in community life by providing access to resources, services, and model programs.

Dear Friend, With its intricate web of billions of neurons, the brain is the most complex organ in the human body. Especially complex is the brain of a young child, continuously evolving and forming hundreds of new connections every second. Each pathway is interwoven with another, creating a neural network that delivers signals throughout the nervous system, enabling a child to move, speak, and learn. When something goes awry, whether through a turn of genetics or a twist of fate, this delicate network can unravel, disrupting function or behavior and locking a child’s potential inside.

At Kennedy Krieger Institute, we are dedicated to finding the keys to unlock the potential of children with problems and injuries that affect the developing brain.

Sometimes that means pinpointing a causal gene or biomarker, or reactivating neural pathways. Other times, it’s understanding how to reach children with uncontrollable behaviors so they can learn, or helping families to advocate for their children’s needs. We are always looking for the next breakthrough, and we are committed to sharing our knowledge to help children everywhere.

None of this would be possible without you. We are so appreciative of your commitment to helping us unlock the potential of the patients, students, and families we serve.

Sincerely,

Gary W. Goldstein, MD President and CEO

PATIENT CARE KennedyKrieger.org/PatientCare

Our awareness and understanding of developmental disorders rders and injuries have dramatically increased in recent years, and Kennedy Krieger has responded with a broad range of patient care programs that help more than 20,000 children and young adults each year. Programs are provided in a variety of settings, including inpatient, outpatient, home, and community.

Our comprehensive approach to patient care draws on science, medicine, therapy, and education to address the problems that affect a child’s development. We believe that early identification and evidence-based interventions are key to maximizing potential and preventing major problems throughout a patient’s life.

For each patient, a team of specialists from multiple disciplines works with the family to create a tailored care plan aimed at unlocking the child’s potential.

Some of our recent patient care highlights and accomplishments include: ○ Created new programs to serve patients’ needs, including the Sickle Cell

Neurodevelopmental Clinic, Pediatric Epilepsy and Neuropsychiatry Program, and Psychiatric Mental Health Program. ○ Formed a telemedicine partnership with Atlantic General Hospital that

allows us to reach patients in rural areas on the Eastern Shore. ○ Expanded outpatient locations and services to better serve families living

in Howard, Anne Arundel, Montgomery, and Prince George’s counties, and Washington, D.C. ○ Launched the Moser Center for Leukodystrophies to provide

comprehensive care and research focused on preventing, treating, and curing leukodystrophies.

LOGAN’S STORY When a seemingly routine illness turned into something much more serious for 3-year-old Logan, Kennedy Krieger was there.

“

The therapists at Kennedy Krieger are amazing. This was the most difficult nightmare any parent could imagine, and they made it OK. They give every parent hope.

”

– Logan’s Mom

PATIENT CARE Logan loves dollhouses, fairies, and

spending time with her mom and dad. She has a smile that can light up any room. But a year ago, she had little to smile about. Last spring, Logan developed a fever that wouldn’t break. The pediatrician thought it was an ear infection, but a course of antibiotics didn’t help. Two weeks later, Logan still didn’t want to get out of bed. When her mom, Brianna, tried to help her stand, Logan fell to the floor.

At the emergency room, she seemed to lose all function. Her arms were the first to go limp, then her legs and the rest of her body. “From her neck down, she was a noodle,” recall her parents, Reggie and Brianna, who will never forget seeing their daughter so helpless, with tubes connected to her tiny body.

Tests revealed she had transverse myelitis, a rare neurological disorder that can cause permanent paralysis. Logan needed intense inpatient rehabilitation and medical care, and her family found it at Kennedy Krieger’s International Center for Spinal Cord Injury. At first Logan was scared and didn’t understand why she needed to stay in the hospital and undergo therapy. The therapists reassured and encouraged her, explaining that the harder she worked, the stronger she would become. They made therapy fun by demonstrating first on her stuffed animal, and showing her pictures and videos for motivation.

Like all patients at Kennedy Krieger, Logan had a team of specialists working together to help her and her family. Logan’s team included an occupational therapist, a physical therapist, a physician, and a behavior therapist to help her cope. “The therapists at Kennedy Krieger are amazing,” says Brianna. “This was the most difficult nightmare any parent could imagine, and they made it OK. They give every parent hope.”

Logan underwent daily activity-based restorative therapy—exercises and activities such as functional electrical stimulation that focus on prompting cells to “remember” how to move while encouraging the growth of new nervous system cells. Slowly, Logan began to regain function and movement. She had to relearn everything, from how to move her arms and bend her legs to how to pull herself up to stand. Once she was stabilized, she went home but continued with outpatient therapy. On September 28, 2014, Logan began walking independently again. It’s a date that her mother says will be engraved in her brain forever. Soon after, Logan began running and hasn’t stopped since. Her ankles are weaker than they once were, but Logan has made a near complete recovery.

“We are so grateful,” says Brianna. “People come from all over the world for the medical care Logan received at Kennedy Krieger.”

FINDING THE KEYS FOR LOGAN Logan’s team of specialists used activity-based restorative therapies to help her regain function and movement, and a tailored treatment plan that motivated her to improve skills.

Finding the keys to spinal cord injury recovery The International Center for Spinal Cord Injury at Kennedy Krieger Institute offers what families so desperately need: innovation, expertise, and hope. Hope for recovery of sensation, function, mobility, and independence. At our center this isn’t a dream; it’s a philosophy based in evidence.

The center offers an intense, medically supervised therapy program that emphasizes activity-based restorative therapies focused on recovery for children and adults—even those with chronic paralysis.

Perhaps what makes the center so unique, however, is its focus on helping patients reach personalized goals, the everyday accomplishments others may have told them were impossible. For some patients, this may mean adaptive skiing or competing in handcycle marathons.

For others, it may mean riding a horse or walking across the stage at graduation. Whatever the goal, the team at Kennedy Krieger does everything possible to help our patients find the keys they need to achieve their goals.

In the News

Lizzie Neighbors, a physical therapist at the Institute, and Megan Silcott, a patient in our International Center for Spinal Cord Injury, are featured in a “Good Morning America” segment highlighting Megan’s journey to walk the runway during New York Fashion Week.

Read Megan’s story at KennedyKrieger.org/Megan

“The primary component of the team is the patient.

She’s in the middle of a circle of specialists who are working to help that patient reach her potential.”

Cristina Sadowsky, MD Director of the International Center for Spinal Cord Injury

SpinalCordRecovery.org

RESEARCH & TRAINING KennedyKrieger.org/Research-Training

At Kennedy Krieger Institute, we are dedicated to understanding and treating the problems and injuries that affect a child’s developing brain.

Our scientists focus on dozens of key research areas, such as autism, brain injury, cerebral palsy, spinal cord injury, behavioral disorders, genetic muscle disorders, and intellectual disability.

With advances in imaging technology, genome sequencing, and bioinformatics, our knowledge continues to expand, leading to better diagnoses and more advanced interventions. In addition to sharing our knowledge through published research, every year Kennedy Krieger trains hundreds of professionals who go on to deliver life-changing care to children across the country and around the world.

Some of our recent research and training highlights and accomplishments include include: ○ Research initiatives at the Institute have led to the passage of legislation to

implement newborn screening for adrenoleukodystrophy (ALD) in seven states, enabling early diagnosis and life-saving therapies, therapies and paving the way toward nationwide implementation. ○ Researchers developed a new xenograft model for successful regeneration

of human skeletal muscle in mice, mice enabling accelerated research in facioscapulohumeral muscular dystrophy. dystrophy ○ The nation’s largest online autism research effort, the Interactive Autism Network

(IAN), reached more than 50,000 registered participants. participants ○ The RISE (Research Initiatives for Student Enhancement) programs expanded

to include partners in California, Georgia, Ohio, and South Dakota, and continued to provide training for undergraduate, graduate, and professional students to increase the diversity of the public health workforce and reduce health disparities in underserved populations.

MORGAN’S STORY Our researchers are at the forefront of understanding and treating brain injuries including concussions, placing patients like Morgan in the best of hands.

“

Parents don’t realize—I never realized—how much time it takes to truly heal the brain. I learned so much from the doctors at Kennedy Krieger.

”

– Morgan’s Mom

RESEARCH & TRAINING Morgan loves lacrosse and soccer, and is

known for her high energy and athleticism. But a sledding accident threatened to change that.

During an afternoon playing in the snow, Morgan’s sled veered out of control and her head collided with her big sister’s. No one knew it at the time, but Morgan had sustained a concussion. Her mother, Lizzy, called her pediatrician’s office, and the nurse practitioner advised watchful waiting. Later that day, Morgan began showing worrisome symptoms.

She seemed lethargic and irritable—out of character for the active 7-year-old. “I saw her demeanor changing; her coloring had changed,” recalls Lizzy. “She was not her happy, bubbly self.”

Morgan’s mom knew something was wrong and called the pediatrician again, asking to be seen. The doctor took a look and sent them to the emergency room. A brain scan showed no swelling or bleeding of the brain, but revealed a broken orbital bone, for which she was referred to an eye specialist. They left the ER with a concussion diagnosis, but no clear care instructions other than to avoid sports until her symptoms stopped. Fortunately, Morgan’s mom recognized the seriousness of concussion. She turned to Kennedy Krieger for her daughter’s care. Morgan underwent a thorough evaluation by specialists which included medical, cognitive, and motor testing. Doctors explained that if Morgan resumed activities too soon, her brain would not have the chance to properly heal. This meant no running or jumping, no climbing, and no sports, which was devastating to Morgan, who had recently made the travel lacrosse team. Even sedentary activities like watching TV or reading could be too taxing and cause her symptoms to worsen.

Doctors gave her a detailed concussion care plan to follow at home and school.

“It was very scary, very hard, because she is so active and just loves running,” says Lizzy.

“But we knew that if she had a second concussion on top of the first one, the damage could be lasting—it could be a forever injury.” Concussion care is complex; unlike with a broken arm in a cast, you can’t see into the brain to find out its condition. And with a 7-year-old, it can be difficult to discern normal behavior from nuanced symptoms, like irritability. But Morgan was in good hands. Kennedy Krieger’s experts have been treating children with brain injuries for nearly 40 years, and its researchers are at the forefront of investigating the best ways to diagnose and treat concussions and prevent long-term effects on the brain.

Through a series of follow-up visits at the Institute, specialists continued evaluating Morgan’s progress and refining her recovery plan. She was gradually allowed to resume some activities, while being monitored for any increase in symptoms. Eight weeks after her injury, doctors determined that it was safe for Morgan to return to all normal activities, including lacrosse.

Morgan was able to join her team for the last half of the lacrosse season. Her first game back, she scored a goal. Morgan’s mom is grateful for her daughter’s progress and for the doctors who treated Morgan. “I learned so much from the doctors at Kennedy Krieger,” she says. “I left the ER without an education, whereas at Kennedy Krieger the doctors sat down and had a long talk with us about concussions. I left with a plan for what she was and was not allowed to do that I could share with her school and with her coaches.”

FINDING THE KEYS FOR MORGAN The care Morgan received at Kennedy Krieger was based on nearly 40 years of experience treating children with brain injuries, and its researchers are on the forefront of investigating the best ways to diagnose and treat concussion and prevent long-term effects on the brain.

Finding the keys to understanding brain injury and concussion Kennedy Krieger Institute has a long and rich history of expertise in pediatric brain injury, both severe and mild, including concussions. While most concussion research elsewhere has focused on teens and adults, investigators at the Institute are casting a wider net to include young children.

Right now, there is no biomarker to indicate when a child has a concussion or when he or she is fully recovered, so decisions about returning to activities are based on behavior including cognitive and physical testing. In young children, though, it can be difficult to discern normal behavior from concussion symptoms. Dr. Stacy Suskauer and her colleagues at the Brain Injury Clinical Research Center are researching a potential biomarker for concussion through a study funded by the National Institutes of Health in partnership with the National Football League. One possible outcome is a small, portable device that could be used in schools and on sidelines to reliably evaluate for concussion and measure recovery.

Dr. Suskauer 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. Through her research and thought leadership, she is working to establish much-needed evidence for clinicians and parents to recognize the signs of concussion and understand how to safely recover.

In the News

Dr. Suskauer’s leadership in the field of brain injury was recently recognized when Huffington Post’s PARENTS blog asked her to become a guest columnist with a piece about concussion occurrence in young children, discussing the causes of concussion and its signs and symptoms, and explaining the importance of early detection.

KennedyKrieger.org/Huff-Post-Concussion

“Right now, we don’t have a biomarker for when a child has recovered from concussion. What our research does is look at more direct measurements of what’s happening in the brain.”

- Stacy Suskauer, MD, Director of Brain Injury Programs

KennedyKrieger.org/BrainInjuryResearch

SPECIAL EDUCATION KennedyKrieger.org/SpecialEducation

Kennedy Krieger is an award-winning and nationally recognized leader in special education, providing innovative models of education for children with a wide range of learning, emotional, physical, neurological, and developmental disabilities.

Whether at our day schools, our partnerships with public school systems, or any of our other locations throughout the Baltimore-Washington region, we strive to provide the innovative and customized approaches that students with complex disabilities need for success.

Some of our recent special education highlights and accomplishments include: ○ Expanded special education to international students through the Student

Exchange and Visitors Program. Student referrals are being made from Asia, the Middle East, and Europe. ○ Built a new, fully accessible, multipurpose sports field for use by both the

school programs and our adaptive sports program. ○ Expanded our special education consulting services to additional states,

including Louisiana, Indiana, and Texas, to help teachers better serve children with special needs. ○ Implemented a virtual classroom training environment with

student avatars to provide teachers with opportunities to practice specialized teaching skills.

NOAH’S STORY When Noah was young, his teachers and those closest to him were overwhelmed by his difficult behaviors. It was hard to see his natural gifts.

“

The change in Noah has been remarkable. It’s like we got a brand new kid!

”

– Noah’s Mom

SPECIAL EDUCATION Noah is naturally funny and likes to

make up his own jokes. He loves singing and music. He loves to help people, too. But when Noah was young, it was hard to see his natural gifts.

His teachers and those closest to him were overwhelmed by his difficult behaviors.

When Noah was in fifth grade, his behavior started becoming more and more difficult at home and at school. He was very aggressive. He was hitting. He was spitting, recalls Noah’s mom, Diana. “He wasn’t getting the support he needed…He just didn’t know how to cope.”

It’s a situation that happens all too often for children with autism. Diana was getting calls every day from the school asking what she was going to do about his behaviors.

“It was a very difficult time for us and for Noah too, because he knew he didn’t want to be like that,” says Diana. “But he was reacting the only way he knew how…it was a really tough time.”

Noah needed a school that specialized in the unique needs of students with autism. When the family visited Kennedy Krieger’s Montgomery County School, they instantly knew it was the right fit.

Kennedy Krieger worked with the family to understand Noah’s needs and how best to motivate him. Noah’s team included a social worker, speech therapist, occupational therapist, behavior analyst, and teachers, all working together to provide the support he needed to learn. And they developed a strong relationship with Noah’s family to ensure consistency between home and school.

Now in high school, Noah is thriving. This past year was a special one for Noah. He won awards for most improved student and the president’s education award for outstanding academic achievement.

“He’s just come so far,” says Diana. “We could not have done it without Kennedy Krieger.”

FINDING THE KEYS FOR NOAH Kennedy Krieger was able to off er Noah what so many other schools could not: an understanding of the brain-behavior relationship in children with autism, and how to translate this knowledge into academic success.

Finding the keys for students with autism One in 68 children in the United States has autism spectrum disorder, and the numbers are growing. To meet the rapidly growing educational needs of children with autism, Kennedy Krieger’s School Autism Services draw on the Institute’s vast collective knowledge of brain development, behavior, and learning in children to help unlock the promise of students with autism.

Every child with autism has unique learning needs. That’s why a team of highly trained specialists works together with each family to create an individual education plan designed to help their child succeed in school. One student might need a structured system of motivation and rewards to prevent behavior from getting in the way of learning. Another might require time in the school’s state-of-the-art multi-sensory room, where swirls of color dance around the walls, rich scents fill the air, and chairs vibrate in time with soothing music.

Still others benefit from visual learning tools and strategies, or autism-specific technology and apps. Each student has access to whatever therapies are needed to support participation in the educational program. Speech, behavior, art, music, physical, behavioral, and occupational therapy are all available and incorporated into the school day.

Putting together all these integral pieces is no easy task.

Behind every student is an incredibly dedicated and creative team of educational professionals who are passionate about helping students fulfill their potential in school and beyond.

In the News

The Washington Post describes how the siblings of two teenagers with autism came together to plan and execute the first annual prom for students at the Montgomery County Kennedy Krieger Campus.

KennedyKrieger.org/AutismPromStory

“We help our students develop life skills through an active approach to learning, with participation in community and work-based learning opportunities.”

- Linda Brandenburg, EdD, Assistant Vice President for School Autism Services

KennedyKrieger.org/AutismEducation

COMMUNITY INITIATIVES KennedyKrieger.org/Community

Kennedy Krieger’s reach extends far beyond our hospital and classroom doors to improve the lives of individuals with disabilities in the community.

The Institute’s community initiatives include outreach, education, training, early intervention support services, adaptive sports, access to resources, and therapeutic foster care programs.

The cornerstone of our community efforts is the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute, which partners with community organizations and state agencies to provide vital resources and services for families throughout Maryland. Through a focus on professional training, community services, research, and information dissemination, the MCDD helps people with intellectual and developmental disabilities achieve independence, productivity, and inclusion within their communities.

Some of our recent community highlights and accomplishments include: ○ Conducted statewide trainings for more than 8,000 individuals, families,

and professionals. ○ Celebrated the reappointment of a MCDD representative by President

Obama to a key administration post advising on policies that affect individuals with intellectual disabilities. ○ Expanded Project HEAL (Health, Education, Advocacy, and Law) partnerships

to include RE/MAX Preferred, Ballard Spahr LLP, and DLA Piper, one of the world’s largest law firms. ○ Continued statewide developmental disability community

outreach and advocacy initiatives, providing advocacy and legal services and access to resources and support for families.

DAVID’S STORY As David’s only caregiver, Sheryle worried about her grandson’s future as she watched him struggle to learn and fall further behind at school.

“

Project HEAL empowered me to advocate for my grandson. He is now receiving the services he needs, and I know the right questions to ask when an attorney isn’t with me.

”

– David’s Grandmother

COMMUNITY INITIATIVES From a young age, David showed anxiety

and attention problems, and had frequent mood swings. In school, he struggled with learning and fell behind, so much so that in fifth grade, he was reading at only a first-grade level. David was frustrated and angry and frequently acted out. On bad days, he would shove books and papers to the floor and crouch under his desk or bolt from the classroom. To his adoptive grandmother, Sheryle, a retired teacher, it was obvious that David needed help. But her request for additional support for her grandson went unheeded at the school. Instead, they seemed to blame her for David’s learning problems and expected her to fi x his “inappropriate behavior.”

As David’s only caregiver, Sheryle worried about David’s future, especially as she approached the milestone age of 70. “I decided I had to do something,” recalls Sheryle. “I didn’t want to lose David. I didn’t want him to be the child you read about in the newspaper—a child who showed problems, but no one did anything.” Sheryle searched for help, and found Kennedy Krieger’s Project HEAL (Health, Education, Advocacy, and Law). The only medical-legal partnership in Maryland, the program offers help navigating the educational system for families of children with disabilities.

While David began outpatient treatment at Kennedy Krieger, Project HEAL attorney Karen McLaughlin consulted with David’s doctors and traveled to the family’s community on the Eastern Shore to help Sheryle advocate for David’s educational needs. Karen attended multiple meetings with the school and Sheryle to advocate for the services and supports David needed to be successful. Karen explained that David had a right to these services under federal and state laws.

With an attorney knowledgeable about both the educational system and David’s clinical needs by Sheryle’s side, the school began to respond. The school system hired an aide to work one-on-one with David each day and began making other changes, such as allowing him to enroll in extended school year services.

The changes have made a profound difference for David. “He knows he has limitations, but he doesn’t feel angry anymore,” says Sheryle. “He doesn’t have to hide under his desk, because he knows people are there to help him.” David’s mood improved, too. Now when Sheryle asks David about his day, he says, “I had a great day!”

“Project HEAL empowered me to advocate for my grandson,” says Sheryle. “He is now receiving the services he needs, and I know the right questions to ask when an attorney isn’t with me.”

Sheryle turned 70 in July. But now, the weight of worry about David’s future has lessened because of the impact that she and Project HEAL had on her grandson’s education and his future.

.

FINDING THE KEYS FOR DAVID Project HEAL helped Sheryle navigate the complex educational system and become an advocate for her grandson, ensuring that he receives the educational services he needs.

Finding the keys through medical-legal partnership Navigating the complexities of the educational system to ensure that a child’s educational needs are met is overwhelming for many families of children with intellectual and developmental disabilities. It requires knowledge of federal disability laws, special education, and medical conditions—a rare combination of expertise.

Maureen van Stone recognized the need for this expertise and created Kennedy Krieger’s Project HEAL, Maryland’s only comprehensive medical-legal partnership. A community-based program of the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute, Project HEAL provides comprehensive advocacy and legal services for children with intellectual and developmental disabilities and their families.

Project HEAL attorneys collaborate with Kennedy Krieger healthcare professionals and trainees to ensure that patients receive the medical and legal care they need, now and in the future. It’s one more way Kennedy Krieger is committed to serving children and families in the community.

In the News

A feature story in The Baltimore Sun highlights a family helped by Project HEAL, while providing the history and mission of the program.

KennedyKrieger.org/ProjectHEALStory

“Project HEAL educates and empowers family members to advocate for their loved ones long after we close our case with them.”

–Maureen van Stone, Esq. Director of Project HEAL

KennedyKrieger.org/ProjectHEAL