Potential Summer 2015

potential A publication of Kennedy Krieger Institute

Competitive Spirit: Becoming the Athlete He Knew He Could Be

Teen with Paralysis Rocks the Runway Safe Haven: Overcoming Childhood Trauma Rising Up: Professional Training Program Aims to Reduce Health Disparities

We are all born with great

potential

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

A publication of Kennedy Krieger Institute Volume 15, No. 1 • Summer 2015

Inspiring Potential Trailblazers Ambassador Program connects inpatients and families with mentors who have been in their shoes.

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FEATURES

Letter from our

President At Kennedy Krieger Institute, every day we are finding the keys to improve the lives of the children and young adults who come through our doors. We are dedicated to swiftly transferring our research findings to clinical care, enabling our patients and students to overcome enormous obstacles.

For Kevin DiLegge, a young man with cerebral palsy, a dedicated physical therapist identified innovative therapies and equipment to help him discover his competitive spirit.

He now competes in triathlons, marathons, and adaptive lacrosse, among other sports.

Megan Silcott is realizing her dreams of a future in fashion modeling and acting after activity-based restorative therapies and skilled therapists helped her rehabilitate following a spinal cord injury.

Walking Tall When a rare condition left Megan Silcott paralyzed, her dreams of a future in fashion and acting were put on hold—until Kennedy Krieger helped her walk the runway at New York Fashion Week.

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Safe Haven Helping families impacted by traumatic experiences.

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Competitive Spirit Innovative therapies helped Kevin DiLegge become the athlete he knew he could be.

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Program Spotlight Rising Up Professional training program aims to reduce health disparities.

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RESEARCH Frontiers Turning Today’s Research Into Tomorrow’s Care Clinical Trials Unit helps advance treatment, prevention, and possible cures.

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IN MY Own Words Francisco Oller, Life Lessons Former patient shares words of wisdom for coping with life’s challenges. 12

And families facing traumatic experiences such as homelessness and community violence are learning coping skills and resilience based on evidence-based therapies through our Center for Child and Family Traumatic Stress.

News briefs & Events

Our work doesn’t just impact those who come through our doors. Through our unique public health leadership training programs, we are tackling health disparities in underserved populations by increasing the diversity of those who care for them.

potential

As the future unfolds, we will continue to push the boundaries to offer the most advanced therapies, scientific research, educational innovations, professional training, and community initiatives. We will never stop searching for the keys to unlock the potential of the children and families we serve.

Kennedy Krieger in the news and upcoming Institute events. 13

Editor

Art Director

Contributing Writers

Designer

Kristina Rolfes

Amy Mallik

Abigail Green, Christianna McCausland, Francisco Oller, and Tina Rosenau

AVP Marketing and PR

Bryan Stark

Proofreader

Nina K. Pettis

Media Inquiries

Creative Services manager

Sarah Mooney Photography

Erin Parsons

Bryan Stark

Publication Inquiries

Bill Schilling and The Art Institutes

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

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. © 2015, Kennedy Krieger Institute

On the cover: Kevin DiLegge, patient and athlete

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

Inspiring potential

Trailblazers Ambassador Program connects inpatients and families with mentors who have been in their shoes

by Tina Rosenau

My son, Josh, was injured in a bicycling accident in July of 2013 at age 15. Josh hit a boulder, which snapped his bike frame in half and launched him over the handlebars. His shoulders took most of the force, causing his spine to compress.

The accident left Josh paralyzed from mid chest down.

When Josh was admitted to Kennedy Krieger for inpatient rehabilitation, my husband, Allen, and I were overwhelmed with emotions. We worried about what Josh’s future would hold, as we watched him struggle with even the simplest of tasks.

At the same time, we felt blessed and grateful that our son was still with us.

It was a scary time, but the kind and compassionate staff made it less overwhelming and helped our family prepare for the transition to life at home.

A social worker told us about the Ambassador Program, which matches inpatients and families with mentors who have previously been through the inpatient rehabilitation experience. We were matched with Marshall, a former patient with a spinal cord injury, and his mother, Margaret, from Ohio. Both boys were injured at around the same age, and love cycling and the outdoors.

Because Margaret Josh’s mentor through the had been in my Ambassador Program reassured shoes, talking to her him that life goes on after a calmed some of my fears and helped me spinal cord injury, and inspired see that life does go him to begin cycling again. on. At the same time, Marshall reassured Josh that life wasn’t over just because he couldn’t walk anymore. Marshall was able to answer Josh’s questions about daily living with a spinal cord injury.

He also told Josh about the Baltimore Running Festival, which inspired him to continue cycling using a handcycle. In October, the two met in person at the event, and both plan to participate in next year’s hand cycling marathon.

Our contact with the Garber family was meaningful in a way I am sure they don’t know. Life now is a lot different, yet in many ways the same. We live slower and love more, and Josh’s zest for life and busyness have not changed. He still has big aspirations and takes advantage of every opportunity. This year, Josh played percussion in his high school band, sang in the choir, and landed one of the starring roles in his school musical.

The whole experience surrounding Josh’s spinal cord injury has made our family stronger and more connected, and has shown us the strength of our son.

It has taught all of us not to take even the smallest thing for granted, because life can change in the blink of an eye.

To learn more about Josh’s story, visit PotentialMag.KennedyKrieger.org/Josh.

(from top to bottom) Josh and his dad, Allen, at the Baltimore Running Festival. Marshall Garber at the Baltimore Running Festival. Josh and his parents at home in York, Pa. PotentialMag.KennedyKrieger.org

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Walking Tall When a rare condition left Megan Silcott paralyzed, her dreams of a future in fashion and acting were put on hold — until Kennedy Krieger helped her walk the runway at New York Fashion Week.

Megan Silcott, an athletic and outgoing 16-year-old, was about to start her junior year of high school in August 2012. She was looking forward to getting her driver’s license, prom, graduation, and a future in fashion or acting. But Megan’s dreams were suddenly put on hold one frightening morning when she woke up to find herself paralyzed from the shoulders down.

There were different opinions of Megan’s prognosis, says her mother, Jen Silcott. “Some doctors said she would never recover, that she would probably never walk again. Then there was the other side, which we chose to stick with, that said she would recover, but it was going to take time and therapy.”

Megan dove into therapy with determination. Within six months, she had regained mobility, strength, and control in her upper body and her core, and was walking with a walker. At one point, she could walk short distances without any assistance at all. Then she had a serious setback.

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“You’ve got to keep moving forward in order to get where you want to go.”

–Megan Silcott

Photo courtesy of The Art Institutes.

Megan had been out with friends the previous night but returned home because she was not feeling well. It turned out she was suffering from acute disseminated encephalomyelitis (ADEM), an extremely rare condition characterized by a brief but widespread attack of inflammation in the brain and spinal cord that damages myelin, the protective covering of nerve fibers.

Megan was rushed to the hospital and put into a medicallyinduced coma to prevent further brain damage. Then she was brought to the International Center for Spinal Cord Injury at Kennedy Krieger Institute, where she remained for three and a half months.

Her mother believes this was due to a combination of factors. Megan had gone back to school and cut back on her intensive therapy regimen, and the weather got colder. By January 2014, Megan was noticeably weaker and dependent on a wheelchair. So her family made the decision to bump up her therapy again and have her tutored at home.

While Megan’s continuing recovery shocked the fashion world and most others who have heard her story, it comes as no surprise to those who work with her at Kennedy Krieger. “There’s always hope for recovery,” says Neighbors. Getting Megan back on her feet and even back to where she was before her injury is “her goal and that’s my goal, and we’re always working toward it.”

When Lizzie Neighbors, a physical therapist at Kennedy Krieger, began working with Megan last October, the teen’s strength—and spirits—were very low. “Like you could expect, she was very disheartened. She had worked so hard to get where she was before, and having this setback without a known cause was a hard thing for her to grasp,” says Neighbors.

But even more important is the staff’s unwavering dedication to instilling patients with the hope and drive to work toward recovery, day after day. “It’s always tough when you’re put in a situation like this, but you’ve got to keep moving forward in order to get where you want to go. It’s not going to come to you,” says Megan, who wants to attend acting school and move to California one day. “So that’s why I just continue to work for it. That, and I want to keep myself in shape!” n Abigail Green

A Turning Point Megan also met another person at Kennedy Krieger who would play a big role in her recovery—Patrick Rummerfield. A patient liaison who has been described as “the world’s most fully functioning quadriplegic,” Rummerfield has competed in triathlons despite sustaining a spinal cord injury in a car accident decades ago. “He took an interest in Megan and really gave her this hope that, look, something crummy happened to you, but how are you going to use this to your advantage?” says her mother.

Visit PotentialMag.KennedyKrieger.org/MeganS to learn more about Megan’s story and the Institute’s spinal cord injury program.

Rummerfield had a friend, F. Scott French, who works for The Art Institute in New York.

A couple of phone calls later, and Megan was walking the runway as a model at New York Fashion Week in February. She agreed without a moment’s hesitation, and wasn’t fazed at all by the ensuing flood of publicity from the Huffington Post, Fox News, and Good Morning America, among other outlets.

“I just figured if the opportunity opened up for me, I might as well take it,” says Megan, who walked down the runway on her own with a walker, and later in a wheelchair pushed by designer Nina Perdomo. “It was crazy. It was so fun.

I met a lot of nice people. It was all around a good experience.”

While Megan was not nervous at all, her mother certainly was. “I was freaking out,” says Jen with a laugh.

“But I think it was so good for her in all aspects—mentally, physically …

I don’t think it really ever frightened her.” The outpouring of love and support for Megan and her family was huge. A GoFundMe page set up by a friend has raised $14,000 for a special therapy bike for Megan that is not covered by insurance.

The center has a long history of opening the door to experiences that patients like Megan (above, with physical therapist Lizzie Neighbors and personal trainer Victoria McHugh) may think are impossible due to their injuries.

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The Center for Child and Family Traumatic Stress (formerly the Family

Safe

Haven Helping families affected by traumatic experiences

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n the bustling urban center of Baltimore, the Center for Child and Family Traumatic Stress at Kennedy Krieger Institute offers a bright, childfriendly oasis for families and children struggling with the effects of traumatic experiences. These are children who may live in daily fear of community or domestic violence, who may have lost a parent or been separated from a loved one, or may have experienced physical or sexual abuse or neglect. Within these safe walls, families can access counseling provided by trained therapists as well as psychiatric, psychological, and case management services. Early intervention (most children are aged 4-11) allows the children to manage their stress and learn resilience that will help them be more successful in school and in life.

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Center) is a busy place, seeing over 1,000 patients a year and working with close to 600 families.

Children are referred to the center because their emotions have become unmanageable at home or school and are interfering with their ability to succeed.

After an extensive phone interview, families are seen at the center for assessment, a mental health diagnosis, and recommended treatment services that best fit the child and family’s needs.

Sarah Gardner, LCSW-C, director of clinical services at the center, explains the importance of working with the entire family. “Parents or caregivers Children work on healing often fear they’ll be blamed for the by sharing difficult diagnosis or for stressful experiences the stories. (Above: Kaitlyn Hussey with therapist child was exposed to, and that’s not a very Mirian Ofonedu.) good place to start a conversation about change or developing new routines,” she says. “I’m a big believer in developing a good working alliance with the family… They can’t undo what’s already happened, but there’s a lot they can do to help the child get on track.”

Working closely with families is especially important because many face ongoing threats to safety, including community violence. “We place a lot of emphasis on helping caregivers to manage their own stress and build support networks,” says Gardner. “Through evidencesupported individual, family, and group approaches, we offer caregivers and children the chance to increase positive communication and find new ways to make sense of difficult experiences. These things, in addition to good family routines, make daily life feel more manageable.”

Services at the center are structured to help children talk about their traumatic experiences, confront negative emotions, and better control their behavior. There is a focus on stress management, countering feelings of selfblame that many traumatized individuals experience, and enhancing parenting skills.

One mother who came to the center because her two sons were suffering from the impacts of homelessness and community violence explains that the psychological evaluations they received helped the whole family better

understand their behaviors. Through the center, she learned about valuable community resources and how to better manage her own emotions when parenting. As a result, both children are improving.

This family’s experience demonstrates the importance of early intervention and supporting caregivers. “The earlier you address the vulnerabilities, the better able the child will be to calm himself down, ask adults for help, and benefit from interventions,” Gardner states. Often, children who grow up in unsafe environments or experience disruption spend so much energy trying to manage stress that they fall behind in school, relationship development, and learning the skills they will need as adults.

This increases the likelihood of problems in the future, when they are responsible for raising their own families.

Evidence-based approaches, such as biofeedback therapy, help patients learn to control their heart rate, muscle tension, and blood pressure.

(Left: Therapist Shahla Adam and Kwon Robinson.)

“Mental illness is real and there’s nothing wrong with getting help.

It’s going to benefit your child, and it’s going to benefit you as well in the long run.”

–Latanya Waller, parent

Nearly half of U.S. children have experienced traumatic stress, which can affect brain development and have lifelong consequences on both physical and mental health if untreated.

Early intervention can help.

Learning Resilience The center emphasizes learning resilience—the capacity to withstand stress and overcome adversity—by teaching how to manage emotions and find meaning in experiences, for example.

For children with anxiety, building resilience can seem an uphill battle. Katreese Wellons, 10, was struggling at school to the point that her mother, Latanya Waller, was receiving daily calls from administration.

After the family was in a car accident, Katreese’s anxiety worsened—she wouldn’t get in a car, did not want to go to school, and cried at the slightest provocation. She was diagnosed at the center with generalized anxiety, and now works with therapist Chelsea Haverly, LCSW-C, to manage it.

The heightened anxiety Katreese felt is common in children seen at the center.

Therapists help children to express Left untreated, anxiety can leave their feelings and learn coping skills.

(Above: Katreese Wellons with a child feeling powerless, and put therapist Chelsea Haverly.) them at higher risk for substance abuse, depression, and other health concerns as they get older.

But when children learn coping skills such as reframing their negative thoughts, their symptoms decrease and they gain a feeling of control, explains Haverly. “They are able to develop the self-competence needed to more effectively cope with emotions that arise later on in life.”

Waller says the change in her daughter’s behavior since starting treatment has been dramatic. Through meetings with Haverly, she and Katreese’s stepfather have also learned important techniques for talking to their daughter and her school about her anxiety. Perhaps most importantly, the family learned how to tell Katreese that she is not alone and that counseling can help. n Christianna McCausland

When caregivers participate in their child's therapy, the whole family benefits. Pictured left: Kandi Robinson with sons Kwon Robinson (left) and Quis Whitaker (right), with therapist Shahla Adam. Pictured above: Katreese Wellons with mother Latanya Waller, stepfather Santwan Colclough, and therapist Chelsea Haverly.

Visit PotentialMag.KennedyKrieger.org/ TraumaticStress to learn more about the Institute’s Center for Child and Family Traumatic Stress.

PotentialMag.KennedyKrieger.org

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Competitive

Spirit Innovative therapies helped Kevin DiLegge become the athlete he knew he could be

Kevin DiLegge is a competitor. According to his mother, Mary, her son likes to do just about anything except sit at home. Now 26, Kevin was diagnosed with cerebral palsy as an infant.

Thanks to innovative physical therapy interventions at Kennedy Krieger Institute, Kevin learned to walk for the first time with a gait trainer and began riding a bike on his own last year.

Kevin (above) at home on his specialized trike, which he learned to ride at age 25 thanks to physical therapist Karen Good (left).

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Building a Lifelong Relationship Mary can still recall when she first met Alexander Hoon, MD, MPH, director of the Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine at Kennedy Krieger. Mary had taken her father to an eye doctor appointment at Johns Hopkins when Dr. Hoon happened to pass by and notice Kevin, then just six months old. Dr. Hoon said if Mary ever needed help, to call him. Kevin was formally diagnosed with cerebral palsy a few months later, and Mary immediately called Dr. Hoon.

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Kevin’s Journey 2002

“Dr. Hoon is very outgoing and knows how to connect with people, so he made us very comfortable,” she remembers.

Dr. Hoon started Kevin on physical and occupational therapy at Kennedy Krieger and connected the family with resources in the community. As he got older, he received therapy and speech services through Kennedy Krieger schools.

Through transition specialists at the Institute, Kevin was matched with a job at Port Discovery, where he has worked since graduating Kennedy Krieger High School.

For the last six years, he has been an enthusiastic participant in Festival of Trees, raising funds for the Institute.

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“As a parent of a child with a disability, [Kennedy Krieger] has provided a network of resources for guidance and suggestions of where to turn and what to do,” says Mary.

Mary credits Kennedy Krieger with assisting Kevin’s speech and helping him to operate his own power chair.

Though he lacks the hand control to operate the chair manually, his therapists thought he could drive the chair with his head, an inspired idea that has allowed Kevin to use his wheelchair independently. “If someone thinks of something they think he can do, he’s first in,” says Mary.

“He gets that from Kennedy [Krieger] and from their expanding of his horizons.”

Releasing the Inner Competitor As young adults with cerebral palsy like Kevin get older, they face unique challenges. There is less equipment available for adults with cerebral palsy, and for those who have been in physical therapy all their lives, it can be hard to come up “My favorite part of going to with new therapies that keep them PT is seeing Karen Good. She engaged. Karen Good, a physical got me to ride a bike and now therapist at Kennedy Krieger, started working with Kevin five years ago when has me going to the wellness he was referred for aquatic therapy. gym. I never thought that Based on her early observations, she anticipated that his movement would be was possible.” limited. What she discovered in the pool –Kevin DiLegge was a wonderful surprise.

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“Through trials of various kinds of flotation, I realized he could do reciprocal kicking and that he could swim,” she remembers. “When you floated him and helped him steer, he could propel himself under his own power. That was a pivotal point for Kevin.” >> 1990: Kevin began therapy at the Institute as an infant. 2002: Playing the tambourine at church.

A therapist mounted the instrument on his wheelchair tray, so Kevin could play it independently.

2005: Therapists helped Kevin learn to operate his power wheelchair with his head. 2010: Graduated from Kennedy Krieger High School. 2011: Working at Port Discovery, where transition specialists matched him with a volunteer job. 2015: Staying fit at the Institute’s wellness gym.

2015

Good noticed that Kevin’s movement in the pool was similar to the pattern of walking. She decided to put him on the aquatic treadmill.

Sure enough, he could walk with little assistance. Kevin’s advances dovetailed with the arrival of a new piece of equipment—a gait trainer with trunk support that can facilitate walking. Karen helped Kevin initiate stepping with one leg, and he was able to walk—for the first time since childhood—with little additional help.

Solo Cyclist The more Good worked with Kevin, the more she realized his interests and his desire to try and succeed at new things were endless. Based on the pattern of his movement, she wanted Kevin to try to bicycle. Not surprisingly, Kevin was more than willing, but equipment for someone Kevin’s size was not easily available.

Good sought out a specialized trike sized for an adult that Kevin could use. To everyone’s joy and amazement, Kevin got on the bicycle and propelled himself up and down the halls of the Institute. Good says that Kevin is a good example of how patients can benefit beyond what might be expected from a typical clinic.

At 25, Kevin lear support. “T ned to walk in a gait trainer w his is no most clinics, t standard therapy eq ith trunk ” says Goo uipment in d, his physi cal therapis t.

“The aquatic center is a unique resource, and the gait trainer and the trike that he used are not standard therapy equipment and not standard in most clinics,” she says. “These events were made possible by having the right equipment at the right time and having the vision to try it.”

Kevin received his own bicycle in the fall of 2014 and was able to pedal it around the neighborhood. During the winter, he was able to keep exercising at the Institute’s wellness center. His mother says the impact Kennedy Krieger has had on Kevin is nothing short of life changing. “Kevin knows he has a disability, but he doesn’t think that’s going to stop him.”

(pictured top to bottom) Kevin e enjoys competitiv sports, including e triathlons, adaptiv lacrosse, and marathons.

“Kevin’s learning to walk and cycle were made possible by having the right equipment at the right time and having the vision to try it.”

The Finish Line

– Karen Good

Kevin’s passion for sports led him to join an adaptive lacrosse team, and he participates in marathons and triathlons through Athletes Serving Athletes, an organization that pairs ablebodied athletes with athletes with disabilities. He also began adaptive sailing and plans to compete in races this summer.

Kevin says what he likes best about participating in these events is the competition. “It just gets me fired up,” he says, adding that “It's important for me to be physically active through PT and competitive sports because I like a challenge. I live up to it and that makes me feel good.”

Kevin recently learned he qualified for next year’s Boston Marathon. As for Good, she aspires to expand the biking program at the Institute. There are many more patients like Kevin who would benefit. n Christianna McCausland To learn more about Kevin’s story and the Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine at the Institute, visit PotentialMag.KennedyKrieger.org/Kevin.

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Program Spotlight

2012 RISE-UP students

Professional Training Program Aims to Reduce Health Disparities At a time when the U.S. is growing more diverse, the number of clinicians and researchers from underrepresented populations—including racial and ethnic minority populations and people with disabilities—is not keeping pace. Kennedy Krieger’s Harolyn Belcher, MD, MHS, is determined to change that through public health leadership education programs she has led since 2005.

With grant funding from the Centers for Disease Control and Prevention, one of these programs— Maternal Child Health Careers/Research Initiatives for Student Enhancement-Undergraduate Program (MCHC/RISE-UP)—recruits highly qualified students from underrepresented populations and introduces them to the field of public health and developmental disabilities. Students in the summer program are immersed in public health clinical, research, and community advocacy experiences, and mentored by leaders in their chosen field. The ultimate goal of the program is to reduce health disparities in underserved populations by increasing the diversity of those who care for them.

“We know there are health disparities in underserved populations, especially individuals with disabilities, who now make up 19 percent of the population,” says Belcher. “Increasing the diversity of healthcare clinicians and researchers brings a cultural perspective and knowledge to healthcare that enhances the ability of healthcare providers to address the complex needs of underserved populations.”

Over the years, students have gone on to diverse careers in public health. Some go on to graduate or medical school, while others go directly into public health, research, academics, or health-related fields. Many go on to work in the field of developmental disabilities.

Students in the program are mentored by faculty and staff from throughout the Institute, a model built on Kennedy Krieger’s Leadership Education in Neurodevelopmental Disabilities training program— the oldest and largest such program in the U.S. >>

Harolyn Belcher, MD, MHS (center), with colleagues Jaqueline Stone, PhD, PT (left), Leadership and Clinical Education Director, and Jenese McFadden, DM, MS, MBA (right), Program Manager of the MCHC/RISE-UP. Among other awards and honors, Dr. Belcher received the Association of University Centers on Disabilities Award for Diversity and Leadership in November 2014 and the Johns Hopkins University Diversity Recognition Award in 2011.

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Professional Training Program Aims to Reduce Health Disparities (continued)

Students also benefit from the national consortium developed

by MCHC/RISE-UP’s many partners across the country, as well as partnerships with city and state agencies that provide opportunities for hands-on experiences in the community.

“The thing that is most rewarding is that at the end of the summer, the students say, ‘This experience was lifechanging,’” says Belcher. “It is just so powerful.” The enthusiasm is catching on. Ten years ago, the program had about 12 students a year; now, it has expanded to three distinct programs with 60 students, ranging from undergraduate through graduate and professional school and representing many different racial and socioeconomic groups, with close to $1 million in funding per year.

Funding for the program runs through 2016, but Dr. Belcher is hopeful that funding will continue based on its success.

“This program is an opportunity for the Institute to be engaged in a very broad way with the next generation of clinicians, researchers, and advocates in the fields of developmental disabilities and public health,” she says. “By increasing the diversity of those caring for these individuals, we can ultimately improve healthcare delivery.” Kristina Rolfes n

Partnering Organizations • Maryland Center for Developmental Disabilities at Kennedy Krieger Institute • Centers for Disease Control and Prevention • Johns Hopkins University (Bloomberg School of Public Health, School of Medicine, School of Nursing) • Historically black colleges and universities (Morgan State University, Coppin State University, Howard University) • University of South Dakota, collaborating with tribalserving institutions • University of Southern California, partnering with California State University-Los Angeles (a Hispanicserving institution)

Kristin Hunt learned about the training program while she was a graduate student studying clinical psychology at Howard University, and she was immediately intrigued. She was interested in how traumatic experiences affect children, and the RISE program offered the opportunity to delve into data on the population she was interested in studying. “I was able to see in hard, fast numbers how big of a problem trauma is and how it affects kids,” Hunt says. “These were actual children who had experienced [psychological] trauma, and I could see how a traumatic experience manifests in their life, either through stress or psychological issues.” After completing the RISE program, she went on to an internship working with families at the Child and Family Therapy Clinic at Kennedy Krieger, which led to a postdoctoral fellowship and a psychologist position in the Institute’s Department of Behavioral Psychology.

RISE-UP graduate Mandy Cole hopes to bring a unique and valuable perspective to caring for patients with disabilities. “When you have a disability, the assumption is that you can’t do something,” says Cole, who has cerebral palsy and is a Kennedy Krieger patient. While a student, she focused on disability advocacy and is now working toward a career in child life, a profession that focuses on helping children cope with and adjust to illness, injury, or hospitalization. Cole describes the RISE-UP program as “a boot camp” for public health.

“Nowhere else do you get so many different opportunities packed into an internship.”

To learn more about the Institute’s professional training programs, visit KennedyKrieger.org/Professional-Training.

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research frontiers

Turning Today’s Research Into Tomorrow’s Care Clinical Trials Unit helps advance treatment, prevention, and possible cures

Vaccines, antibiotics, mapping of the human genome—every medical breakthrough in history was born through research, and at the heart of treatment research are clinical trials—testing of new medications, devices, or interventions in an attempt to better understand and treat a disease or disorder. At Kennedy Krieger’s Clinical Trials Unit, researchers gather scientific evidence so that our clinicians and families can make the most informed decisions about care.

Until fairly recently, very few medications prescribed by doctors in the U.S. had been studied in children. By necessity, doctors used information from adult studies and adjusted the dose to a child’s weight. The problem with this approach, though, is that children are not small adults. Medications may affect children differently because children do not metabolize medications in the same way as adults.

Fortunately, the landscape is changing. In the past two decades, federal legislation has incentivized, and in some cases required, pharmaceutical companies to invest in conducting pediatric clinical trials, which help ensure that drugs prescribed to children are safe and effective in treating a disorder at a certain dosage.

As a result, we are learning more than ever before about how to effectively treat children. Dr. Robert Findling, vice president of Psychiatric Services and Research at Kennedy Krieger Institute and the director of Child and Adolescent Psychiatry at The Johns Hopkins University, notes that when he completed his training in the 1990s, there was very little scientific rigor on most of the treatments for children with emotional or behavioral difficulty. “We were flying blind or going on anecdote,” he says. “Now, the

amount of information that is reliable and scientifically rigorous has increased in a way that I could have only dreamed of.”

The Clinical Trials Team (left to right): Jackie Sievers, Rebekah Teetsel, Tarrah Ezell, Monica Bland, Kerry Boyer, Da Eun Jung, Becky Hinton, Christy Collins, and Gary Saum. (Not pictured: Drs. Robert Findling, Tanjala Gipson, and Michael Johnston, and Devin Gary.)

Every clinical trial is approved and monitored by the Johns Hopkins Institutional Review Board—an independent committee that ensures that the trial is ethical and that the rights of participants are protected. And all participants, or their parents or guardians, are informed about the treatment they will receive and any known risks or potential benefits of the treatment before they consent to the trial, a process known as informed consent.

For many families, clinical trials at Kennedy Krieger offer access to promising new treatments not available anywhere else— treatments that might make a difference in their child’s quality of life—while receiving extra care and monitoring from doctors and researchers who have expertise in pediatric psychiatry and neurological disorders. For others, there is a larger purpose: a chance to help others by advancing research that may lead to medical breakthroughs and improved care for the next generation. At the Clinical Trials Unit, every trial adds to a greater understanding of pediatric disorders, leading us one step closer to finding treatments, preventions, and cures. n

Kristina Rolfes

Robert Findling, MD

For more information about the Clinical Trials Unit and studies that are currently recruiting, visit KennedyKrieger.org/ClinicalTrials or email ResearchTrials@KennedyKrieger.org.

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In My own words

Life

In My Own Words: Francisco Oller

Lessons In life, we face many challenges that we have no control over.

I was born with a rare genetic disease, Pelizaeus-Merzbacher (PMD), that affects my motor skills. In my youth, I was bullied and rejected in school because of my disability. This treatment, however, only strengthened my resolve to make the most of life, and helped me frame several life lessons.

First is living a life filled with self-acceptance, optimism, and continued vulnerability. I’ve developed a mindset: I believe I live without a disability, because I prefer to consider PMD a physical challenge. My physical challenge cannot stop me from living a happy life. Instead, it encourages me toward a life enriched with possibilities in almost everything I do.

My experiences and their lessons led me to motivational speaking.

I’ve spoken not only at Providence College and the University of Rhode Island, but also on National Public Radio in Rhode Island for the segment “This I Believe: Coping with Challenges.” I’ve also had the benefit of speaking to elementary school students and on television in my native Puerto Rico.

Through speaking and sharing, I hope to leave others with a positive outlook, remembering that one can overcome fears and insecurities with a new mindset. By having a ‘why’ to live for, which in my case is inspiring others to overcome challenges, I am able to raise my sights and see what is possible. No matter how dark life can be, I always look for the possibilities. They are there.

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I stress the importance of seeing those with disabilities as equals, loving yourself for your imperfections, and living a life filled with optimism. Do not feel sorry for people with disabilities, but rather, know that they have the courage to go out and adapt to a world that is unfavorable to them.

I do not know how exactly my medical condition will progress. Perhaps someday I will walk without a walker or crutches. I realize that this might never happen, but there is no reason to lose hope. The day we lose hope for a better tomorrow is the day we inadvertently impose limits on ourselves. What matters most in life is how we cope with the challenges that come our way each day.

I will spend my life trying to bring happiness to those less fortunate than me, because I know that happiness comes from giving to others.

I thank my parents and all those who have positively impacted my life. I dedicate my future to do the same for those who may need my efforts, my care, and my enthusiasm. I move forward with courage, I pursue my dreams, and I continuously challenge myself to chase the opportunities that are before me.

Visit PotentialMag. KennedyKrieger.org/ Francisco to learn more about his story.

Francisco Oller was born in San Juan, Puerto Rico, and is a junior at Providence College in Rhode Island. He was diagnosed and treated at Kennedy Krieger, where doctors discovered that he had a new mutation of PMD, which was published in the American Journal of Human Genetics in 1999.

news briefs & events

In the National Spotlight Think Concussions Just Happen to Kids Playing Contact Sports? Think Again Dr. Stacy Suskauer, director of the Institute’s Brain Injury Rehabilitation Programs, authored a recent Huffington Post Parents article on the prevalence of concussion occurrence in young children, explaining the causes of concussion, signs and symptoms, and the importance of early detection.

Girls Get Autism Diagnosis Later Than Boys A recent U.S. News & World Report article highlighted a study from Kennedy Krieger’s Interactive Autism Network (IAN) revealing that girls are diagnosed with autism later and less frequently than boys.

Making a Seemingly Impossible Dream Come True The Washington Post shares the story of how the siblings of two teenagers with autism came together to create the first prom for students with special needs at Kennedy Krieger’s Montgomery County Campus.

Subaru “Shares the Love” with Kennedy Krieger Last fall, Valley Motors Subaru of Hunt Valley chose Kennedy Krieger Institute as its hometown charity for the “Subaru Share the Love” event. For the months of November and December, customers who purchased or leased a new Subaru vehicle could select from a list of charities which included Kennedy Krieger to receive a donation from Subaru of America. Valley Motors Subaru plans to continue to “Share the Love,” and Kennedy Krieger will once again be their hometown charity for November and December 2015!

For more information about Kennedy Krieger community partnerships, visit HelpKids.KennedyKrieger.org.

Baltimore Running Festival Saturday, Oct. 17, 2015

New Personal Fundraising Website Want to host a fundraiser or event to help our patients, students, and families? Our new website makes it easy. Personalize your page and share with friends and family to help raise funds and awareness for the Institute.

Visit KennedyKrieger.org/PersonalFundraising to get started today.

All Aboard! Catch a Ride on the Santa Express!

Kennedy Krieger Institute’s Festival of Trees is a three-day, holiday-themed extravaganza that raises awareness and funds for research, treatment, education, and community programs at Kennedy Krieger Institute. Attendees can enjoy more than 700 spectacular holiday trees, wreaths, and gingerbread houses; live entertainment and holiday readings; the Santa Land fun zone for kids; holiday shopping; a silent auction; and much more! To attend, participate in, or sponsor Festival of Trees, call 443-923-7300 or visit FestivalOfTrees.KennedyKrieger.org.

Join the Kennedy Krieger Institute Charity Team in the 2015 Baltimore Running Festival! Whether it’s the Kids Fun Run, 5k, Team Relay, or half or full marathon, we’ve got a space for you! And if you can’t join us in person, you can join the team as a “virtual racer.”

As a member of the Kennedy Krieger team, you can register for free by committing to raise funds for the Institute and our spinal cord injury program. You will also receive additional perks, such as a team Under Armour shirt, breakfast, and access to the hospitality tent.

For more information or to register to join the Kennedy Krieger team, visit KennedyKrieger.org/BaltimoreMarathon.

Want to attend for FREE? Build a Happy Holidays Fundraising Page to help a child with special needs during the holiday season and for every $10 you raise, you’ll receive a FREE ticket to this year’s event!

Use this COUPON for $1.00 off one Admission NOVEMBER 27 — 29, 2015

FRIDAY & SATURDAY 10AM – 9PM SUNDAY 10AM – 6PM

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

MARYLAND STATE FAIRGROUNDS Timonium, Maryland Adults $15 • Seniors $10 • Kids $7

Must present original coupon.

(PTN)

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707 North Broadway Baltimore, Maryland 21205

Give the Gift of Potential By donating to Kennedy Krieger, you can make a difference in the lives of children and young adults 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 n Set up a charitable gift annuity or other life income gift n Include Kennedy Krieger in your will as a charitable bequest n Give through your retirement plan or life insurance policy n Attend one of our special events, or host one of your own n n

To find out more, contact the Kennedy Krieger Office of Philanthropy at 1-800-HELP-KIDS or visit HelpKids.KennedyKrieger.org.

Mary and Kevin DiLegge

unlocking potential. Your support is the key.

“It only took one tour of the hospital to decide that not only did I want to be a financial donor, but I also needed to donate my time and energy to this vital institution that saves and enhances lives daily. I am proud and honored to say that in me, Kennedy Krieger has found a lifelong supporter.”

–Ayana Lugo, Donor