Potential Fall/Winter 2015

potential A publication of Kennedy Krieger Institute

Unlocking Genetic Mysteries: Christian’s Story

A Special Prom for Kids with Autism Kennedy Krieger on the Eastern Shore Research: Talking Trauma

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. 2 • Winter 2015

Inspiring Potential Life With Autism: A Sibling’s Perspective Instead of playing house, she grew up playing ABA with her dolls.

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FEATURES

Letter from our

President Every day I am impressed by the tenacity of our patients, their families, and the professionals at Kennedy Krieger who are devoted to finding the keys to unlock their potential. The stories featured in this issue of Potential exemplify that tenacity.

We are honored to play a part in improving these lives and humbled by the trust families place in us. However, there are many more children and families who are in need of our services. The demand for our specialized, comprehensive care is growing—in the last decade, the number of individuals we serve each year has doubled.

To meet this need, the Institute has embarked on an ambitious $60 million capital campaign that will allow us to bring more resources and services to children and families—like Christian, Anthony, and Kylie featured in this issue of Potential. You’ll hear more in the coming months about this exciting campaign that will allow us to build room to grow our transformative services and programs. We welcome your support of this exciting next chapter.

2016 holds tremendous promise for Kennedy Krieger and those we serve. We’re committed to bringing you more inspiring stories of hope and progress.

Warmest holiday wishes to you and yours, Gary W. Goldstein, MD President & CEO

Boosting Independence Short-term intensive therapy jumpstarts progress toward independence for a young child with a rare genetic disorder.

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A Night to Remember The Kennedy Krieger School in Montgomery County holds first-ever prom for students with autism. Families, teachers, and volunteers made it an unforgettable night.

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Unlocking Genetic Mysteries Christian’s family searched for a diagnosis for years. They finally found answers—and treatment—at Kennedy Krieger Institute.

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Program Spotlight Bridging the Gap Kennedy Krieger is extending educational and healthcare resources to Maryland’s Eastern Shore families.

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RESEARCH Frontiers Q&A: Talking Trauma Joan Kaufman, PhD, talks about the effects of childhood traumatic experiences, including community violence, and her research efforts toward developing effective interventions and social policies.

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IN MY Own Words Kylie Himmelberger, Ready to Launch Guillain-Barré syndrome once took away her independence but now, she is pursuing her dream to commission as an officer in the Air Force.

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

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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.

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© 2015, Kennedy Krieger Institute

(above) Rendering of proposed new outpatient center.

On the cover: 13-year-old patient Christian Meese

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

Inspiring potential

Life With Autism: A Sibling’s Perspective

By Paige Talhelm

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hen my brother Sammy was born, my life was transformed, and not just because he was my first sibling. My life would thereafter be filled with therapy and doctors’ appointments, professionals coming in and out of our house, and a foreign language of sorts with terms like IEP, ASD, and SLP. Instead of playing house, I grew up playing ABA (applied behavior analysis) with my dolls. Sammy has Landau-Kleffner syndrome and autism. He’s also the light of my life.

Being a sibling of autism can be very hard. You struggle to live your own life and also protect your sibling with a disability. It drives me nuts when people stare at him in restaurants or stores. It hurts me to the core if someone uses the ‘R’ word. Sammy and others like him did not ask for their disability, so why should they be picked on?

More importantly, who is to say that my brother’s way of life isn’t normal? Just because he doesn’t do it ‘our way,’ people want him to change. That eats at me every day.

Developmentally, my brother is much younger than 17. He has to work harder every day to do simple tasks others take for granted, yet he does so with a smile. From the moment I first had the chance, I volunteered to work with individuals with disabilities. I wanted to offer the kind of support to others with special needs that I would want in my own brother’s life.

And I loved it.

Sammy is the sole “reason I am pursuing a

career helping individuals with special needs.”

I’m attending Johns Hopkins to get my master’s degree in Education of Autism and Pervasive Disorders. I am also working as a clinical assistant at the Kennedy Krieger Neurobehavioral Unit. I am continuing my volunteer work with two nonprofits that serve the disability community: PALS Programs and The Next Step Programs. All of this is guiding me toward my long-term goal of creating an organization for adults with autism. In a few years, Sammy will be 21 and no longer eligible for public school services.

He will not be able to live on his own or take a job. I want to help him and his peers by creating a place where they can continue to learn after age 21.

Even though Sammy has changed my life in many positive ways, I know that it is still okay to feel jealous or angry at times, not only because he is my brother (we’re siblings, after all!), but because it’s understandable some days to want to live a life without autism. But siblings with autism alter our lives in tremendous ways, and I would not be the person I am today without Sammy.

To read more about Paige and Sammy, visit PotentialMag.KennedyKrieger.org/Sammy.

(above) Paige is a 23-year-old Towson University graduate and part-time employee at Kennedy Krieger. Sammy is a former patient. (left) Paige, Sammy, and brother Jack.

PotentialMag.KennedyKrieger.org

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Boosting Independence Short-term intensive therapy jumpstarts Anthony’s progress toward independence.

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Anthony, now 4, works on improving strength and balance with physical therapist Kate Hill. Before coming to the program, Anthony could not sit upright by himself.

our-year-old Anthony Olvera was born with a rare genetic disorder called Warburg micro syndrome.

Characterized by cognitive, visual, and physical impairment, as well as cerebral palsy, Anthony’s condition meant that his vision was impaired, and he was unable to walk, sit up by himself, or communicate. The family knew the challenges he faced all too well—Anthony’s older brother Giovanni, 15, was born with the same condition.

So when the opportunity arose for early intervention for Anthony, the family wholeheartedly embraced it.

At age 2, Anthony was referred for his first admission to the Focused Interdisciplinary Therapy Program (FIT) at Kennedy Krieger Institute.

FIT serves children and adolescents born with chronic disabilities, or those who have long-term effects from an acquired disability such as traumatic

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brain injury or stroke. The interdisciplinary therapy program gives patients the opportunity for intensive daily rehabilitation, targeting specific therapeutic goals. Patients may work on improving physical abilities, such as sitting, standing, or walking, while others may have a primary goal of improving communication skills through the use of an augmentative device or help with articulation or breath support. Patients also work on activities of daily living, such as handwriting, eating, or dressing.

Short-term Therapy, Long-term Gains Patients referred to the FIT program have typically been receiving outpatient therapies on a weekly or monthly basis, but have reached a point where their care team feels that an intensive bout of daily therapy will help them make more dramatic progress. The specific frequency and duration of therapy varies according to the patient’s age, abilities, and goals.

However, FIT patients usually receive therapy services three to six hours per day, five days a week, for four to six weeks.

Patient care is provided by a team that includes rehabilitation physicians, physical therapists, occupational therapists, speech-language pathologists, neuropsychologists, nurses, and special educators. This intensive interdisciplinary model of treatment has been growing in use across the country as its benefits are increasingly demonstrated. Research is in the early stages, but is very promising. “We have been using this approach for several years with good success and great response from families,” says Joan Carney, EdD, director of the Fairmount Rehabilitation Programs at Kennedy Krieger.

“Anthony was a good candidate because he was making nice progress with his therapist at home, but they felt he could benefit from a center-based program where he could have access to specialized equipment,” said his occupational therapist, Teressa Garcia Reidy.

Ready for School Anthony had also just started a half-day program at the Maryland School for the Blind, so the timing of his FIT admission was ideal to assist with his transition to school.

“His improvements during four weeks were really big,” said his mother, Lorena Hernandez, through an interpreter. He learned to sit up by himself and for longer periods. Before, his trunk muscles were very weak and he would lie down most of the day or sit in an umbrella stroller that offered little support. By the end of four weeks, Anthony was sitting upright on the floor playing with toys, and could sit for an hour in an adaptive chair like he would use in a school environment.

Patients are sometimes recommended for a repeat admission to the FIT program a year or more after their initial admission for a second stint of intensive therapy.

Upon his second admission at age 4, Anthony worked to strengthen his arm and trunk muscles so he could propel and steer a wheelchair. By the end of four weeks, he was

able to push himself all the way down a hall. His therapists also worked with him on a walking device that is propelled similarly to a wheelchair. Using his arms to propel himself, Anthony could eventually take seven to ten consecutive steps with the device.

He made great strides in his communication, as well.

Though Anthony had always been nonverbal, his speech and occupational therapists collaborated to teach him how to use switches to ask for help or request snacks. His therapists and family noticed that he seemed happier and more engaged with the people around him. Even more remarkable was the fact that Anthony, silent during his first admission, began trying to vocalize.

Left and above: Occupational therapist Jordan Sachse engages Anthony and helps him learn to use his hands and grasp.

Greater Independence While Anthony will always have difficulty moving, speaking, and following directions, his condition will not worsen over time. The intensive therapy he has received through FIT has given him greater independence. As he grows older and larger, this will help make it easier for his family to care for him. Anthony’s family feels very strongly that he benefited from his two FIT admissions.

“He is able to move in his wheelchair now,” “My goal for him is to says his mother. “My goal for him is to one one day walk, but even day walk, but even if if that doesn’t happen, that doesn’t happen, I am grateful to Kennedy I am grateful to Kennedy Krieger that he is more independent now.”

Krieger that he is more The FIT program is not independent now.” just for children with –Lorena Hernandez, Anthony’s mom multiple impairments.

Children with fewer needs have also made great progress, benefiting from experienced therapists of all different disciplines working together, says Garcia Reidy. “When you have patients with so many challenges—vision, motor, cognitive—being able to bring each discipline’s wealth of knowledge to the table to come up with the best strategies is key.” n

Abigail Green

To learn more about Anthony’s story and the Focused Interdisciplinary Therapy Program at Kennedy Krieger, visit PotentialMag. KennedyKrieger.org/Anthony.

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A Night to Remember A Special Prom for Kids with Autism

If you saw Madison Plaisance at her prom, you might have mistaken her for a princess. And she would say you were correct. “She told everyone she felt like Cinderella that night,” says her mother, Christie Plaisance.

The 18-year-old twelfth grader at Kennedy Krieger School in Montgomery County allowed her mother to apply makeup before she slipped into her gown and sparkly jewelry. The school’s first-ever prom was a memorable night for Madison, but it was special for her mother, too.

“I have to admit, I cried as soon as I dropped her off and walked out that door because I never thought she’d have that experience [of prom]. It was the most memorable experience of my life.”

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d co-organizer) an Etherton (prom w) Camille Galli en ur La e) ov (ab n Etherton. (belo her brother Justi kie Galli (prom co-organizer). an Fr r te sis and her

Madison has moderate to severe autism and a mood disorder. As the founder of the parent support group at her daughter’s school, Plaisance knew other parents wanted their

children with autism to participate in that most celebrated of teenage rituals, the prom. Frankie Galli, 14, a student at Georgetown Day School, and Lauren Etherton, a 17-year-old student at Albert Einstein High School, who both have siblings at Kennedy Krieger’s Montgomery County School, felt the same.

“I feel like prom is such a big thing for high school, a big step toward adulthood, and a part of growing up,” says Etherton, “and I was bummed that [my brother] Justin didn’t get that experience.”

Prom Committee Lauren Etherton and Frankie Galli’s mother approached administrators at Montgomery County with the idea of organizing a prom with the help of students from Etherton and Galli’s respective schools. Principal Joanna Sandusky welcomed the idea and faculty and administrators put their support behind the effort, which would take many months to plan and execute.

Students from Albert Einstein secured a DJ and created play lists for the event with input from Kennedy Krieger students, as well as handling day-of décor and set-up.

The Galli family hosted a fundraiser at SoulCycle in Washington, D.C., that raised enough money to pay for the prom essentials for this year and next. Frankie Galli and her friends from Georgetown Day School volunteered throughout the year at the Kennedy Krieger School, getting to know the students and working on prom preparation, teaching the students popular dances and making video “social narratives” that explained prom-related scenarios like how to ask someone to dance.

Monica Shah, a teacher at the school, explains that “Children with autism often have difficulty with new scenarios. Social narratives answer questions like who will be at prom? When is prom? Why do we have prom?

It is very specific information that helps the children understand what to expect.”

Dressed to Impress The day of prom, Lauren Etherton made a final PowerPoint presentation to the students that covered every aspect of the event. A parent secured gift cards for each of the female students to use prior to prom at Blue Mercury, a high-end cosmetics store in D.C. The store closed for an hour the day of prom to give the girls the opportunity to have their makeup applied. Other students chose to get ready at the school with the help of teachers.

Late in the afternoon on May 29, about 25 students from the Kennedy Krieger School met up with their typically developing peers from Albert Einstein High School and Georgetown Day School at a clubhouse in Chevy Chase, where a flower-lined walk led the way into a lobby with comfortable seating and snacks. After a little mingling, all the students had dinner—sliders, quesadillas, and chicken fingers—then there was dancing to the hand-selected play lists and a photo booth with props like over-sized glasses and fake lips so the kids could take goofy photos.

In most respects, it was a typical prom, though this one happened to have a quiet room with soft lights, bean bags, and noise-canceling headphones available, things that would be comforting to students with autism who might need a “sensory break” from the fun. Instructors from ZamDance, a company that conducts exercise and dance workshops for students with disabilities, kept the dance floor hopping.

More Than a Dance Teachers say the interaction between the Kennedy Krieger students and their typically developing peers was invaluable.

“They were able to model typical behavior at a prom,” says Hannah Wayne, a teacher at the school.

“So often we are focused on teaching appropriate, calm behavior that we can forget typical teen behavior might be to jump up and down when you’re dancing.”

Etherton says her friends from Albert Einstein reported having more fun at Kennedy Krieger’s prom than any others they’d attended. Her brother Justin, 19, took a bit more convincing.

“He was a little hesitant because it’s something different from his normal routine, but he told me he had a great time,” she says. “I drove him home and as soon as we got in the car he thanked me and said, ‘You did a good job,’ and that made it all worth it for me.” n Christianna McCausland To learn more about the prom and Kennedy Krieger School programs, visit PotentialMag.KennedyKrieger.org/Prom. (pictured top opposite, left to right) 1. Madison Plaisance with her mom, Christie, and brother Luc. 2. Zain Mir with teacher John Jentsch getting ready for the prom (Courtesy The Washington Post by Getty Images). 3. Mathew Dunn (center) dances at the prom (Courtesy The Washington Post by Getty Images).

4. Camille Galli, Lauren Mitchum, and a staff member at the photo booth. 5. An instructor from ZamDance leading the dancers. 6. Frankie Galli and Yan-Raphael Oreilana. 7. Jimmy Ventura dancing (Courtesy The Washington Post by Getty Images). (pictured bottom right) 8. Samra Barnaby with technician Jamilah Silver.

9. Jaleel Ross and Justin Etherton.

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Christian’s family searched for a diagnosis for years. They finally found answers—and treatment—at Kennedy Krieger Institute.

Unlocking Genetic Mysteries Multiple specialists spent eight years seeking a diagnosis for Christian Meese, ordering brain MRIs, muscle biopsies, blood tests, and sleep studies. When Christian and his family turned to the Neurology and Neurogenetics Program at Kennedy Krieger, experts found an answer through whole exome sequencing—a technique that analyzes thousands of genes all at once with a single test.

Knowing the cause of Christian’s developmental disability means doctors can offer targeted treatment for his individual needs.

Megan Meese can hardly remember a time when she didn’t worry about her son, now 13. Megan was deployed to Iraq when Christian was 18 months old. In January 2005, when she returned home to Wheaton, Maryland, Christian, then age 3, should have been rapidly achieving developmental milestones. But instead, there were red flags.

Teachers at his preschool told Megan his gait was off—could something be wrong with his feet? Christian’s speech was regressing, his balance was off, and he was often fatigued.

Megan knew something was wrong.

She took him to the pediatrician, who referred him to a specialist, who then referred him to another, and then another. Thus began the family’s long journey to find answers to what was happening to their son.

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Casting a Wider Net One in six children in the U.S. has a developmental disability, according to the Centers for Disease Control and Prevention. While many diagnoses are well defined, in some cases the cause of a disability is unknown. Families with a nonspecific diagnosis such as developmental delay, cerebral palsy of unknown cause, or intellectual disability may have only half of the answer. Some families never learn the cause of their child’s disorder.

Neurogenetic experts at Kennedy Krieger have found that in up to 40 percent of these cases, a genetic diagnosis can be found through whole exome sequencing. “It allows us to cast a much wider net than with traditional genetic testing,” explains Ali Fatemi, MD, a neurologist in the Neurogenetics Clinic at Kennedy Krieger Institute. “Essentially, we have 20,000 times more data than before by looking at all genes.”

Finding a diagnosis provides critical information for families like the Meeses. Through exome sequencing, the family finally learned that Christian’s difficulty with speech and balance, uneven gait, and extreme fatigue were caused by a rare genetic disorder known as coenzyme Q10 deficiency, caused by mutations in the ADCK3 gene—a type of mitochondrial disease.

Informed by Christian’s diagnosis, his treatment team—which includes neurologist Ali Fatemi, MD, and geneticist Hilary Vernon, MD, PhD—can now provide an individualized health plan tailored to his genetic makeup. Christian’s gene mutation affects his body’s ability to make the coenzyme Q10, which is critical in helping cells create energy. “Now that we know exactly what he has, we can target the pathway that we know is disrupted,” explains Dr. Vernon, who treats Christian’s mitochondrial condition. “It goes from generalized to personalized medicine.”

Doctors can also be more proactive about his long-term health maintenance. Christian is now screened annually for diabetes as well as thyroid and kidney functioning, which can be affected by mitochondrial disease.

“Exome sequencing allows us to cast a much wider net than with traditional genetic testing. Essentially, we have 20,000 times more data than before.”

–Ali Fatemi, MD, neurologist in the Neurogenetics Clinic

“Having a diagnosis is everything,” says Meese. “When you have a name for something, you can then learn more about it.”

The diagnosis has allowed her to find a support network; Megan joined the United Mitochondrial Disease Foundation, a national organization with an online community that allows her to connect with parents of kids who have the same disease. Megan now knows that Christian needs to avoid activities that may cause energy depletion or stress, and take extra precautions if he becomes sick.

With the benefits of finding an exact diagnosis, the value of exome sequencing is becoming better recognized and understood. >>

Understanding Whole Exome Sequencing The majority of genetic diseases are caused by mutations located in the exons, which are the regions of genes that code for protein. Exons, known collectively as the exome, make up about 1.5 percent of the genome, which consists of over 20,000 genes and 3 billion DNA nucleotides. Traditional genetic testing analyzes only one or a few specific genes at a time. In contrast, exome sequencing is a much broader test targeting the exons of nearly all 20,000 genes simultaneously, eliminating a huge amount of guesswork as well as saving time and money.

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Unlocking Genetic Mysteries (continued)

Christian with his service dog, Trevor, who helps Christian with his balance and provides opportunities to enhance his social skills.

“There is a misconception that if a child has a genetic disorder, there is nothing you can do,” says Julie Cohen, a genetic counselor at the Neurology and Neurogenetics Clinic who worked with Christian’s family. “But our research shows there are often things we can do to improve outcomes.”

A study that Cohen co-authored with Drs. Fatemi and Vernon and other colleagues found that having a genetic diagnosis through exome sequencing changed the management of the patient in every case studied. For some, that meant starting a new medication or stopping a medication that wouldn’t be effective. Others came back with a diagnosis for which a clinical trial was available. The study, published in 2014 in the Annals of Neurology, was recognized by Neurology Today as among the three most-noteworthy neurogenetics research findings of the year.

“A diagnosis can lead to a prognosis and, possibly, treatment,” says Cohen. “It also allows family members to understand the chances that future children will have the same disorder.”

“[Exome sequencing is] extremely cost– effective when you think about the alternative, which is more and more investigation, neuroimaging, specialists, and unnecessary medication. If nothing else, it puts an end to the diagnostic odyssey that families are on.”

–Dr. Hillary Vernon, geneticist at Kennedy Krieger Institute 8

An End to the Diagnostic Odyssey The cost of exome sequencing is currently around $7,000, and insurance companies, for the most part, are covering the test. “It’s extremely cost-effective when you think about the alternative, which is more and more investigation, neuroimaging, specialists, and unnecessary medication,” explains Dr. Vernon. “If nothing else, it puts an end to the diagnostic odyssey that families are on.”

Christian started 7th grade this year. Kennedy Krieger specialists evaluated Christian’s educational needs to help determine the best academic placement for him and ensure he received all the necessary tools to be successful.

When Christian has trouble with his balance, he touches the harness of his service dog, Trevor, which allows him to regain his footing. Trevor also provides Christian with opportunities to enhance his social skills, as others always have questions about his dog.

For Megan Meese and her family, it’s hard to overstate how important it is to finally put an end to the mystery, their long search for answers. For the thousands of families who have struggled with uncertainty, having a diagnosis makes a world of difference. More than 300 patients have gone through exome sequencing at the Neurology and Neurogenetics Clinic, and for the 40 percent who finally receive a diagnosis, it brings peace of mind and hope. “I’ve seen it happen so many times,” says Dr. Vernon. “The situation just lightens up, the heavy mystery gets taken away. It really does change the family.” n Kristina Rolfes To learn more about Christian’s story and the Institute’s Neurology and Neurogenetics Clinic, visit PotentialMag.KennedyKrieger.org/ ChristianM.

Program Spotlight

Bridging the Gap Extending Educational and Healthcare Resources to Maryland’s Eastern Shore Families

Nearly 450,000 Marylanders live on the Eastern Shore, with its quiet towns close to the water, pastoral farmland, and relaxed style of living. But with rural living comes more limited access to specialized healthcare and educational services for children with disabilities. Kennedy Krieger Institute has many ongoing initiatives to help close this gap in services, meeting a critical need in Eastern Shore communities.

Teacher Training The Center for Autism and Related Disorders at Kennedy Krieger Institute is working to train educators around the state of Maryland, including the Eastern Shore, on designing and delivering the most effective, evidence-based educational programming for students with autism. Technical assistance is also available to local infants and toddlers programs and school systems serving children with autism. Funded through a grant by the Maryland State Department of Education, the

program “provides an important resource for educators in rural areas where access to training and services is often limited,” says Elizabeth Stripling, EdD, assistant director of outreach and training at the Center for Autism and Related Disorders.

Telemedicine Access to specialized healthcare is also more limited in rural areas. Having a child with special needs often requires frequent doctors’ appointments. Caregivers of children with autism, intellectual disability, or other developmental disorders may have to drive more than 100 miles to find a specialist. Through a telemedicine partnership launched in December 2013 with Atlantic General Hospital in Berlin, Maryland, families can be seen by Kennedy Krieger developmental pediatricians without even leaving the Eastern Shore, thanks to the power of technology.

How it works: Patients are first triaged at Atlantic General and become candidates for a telemedicine evaluation if they have concerns related to autism spectrum disorders, learning issues, attention deficit >>

“[The technical assistance program] provides an important resource for educators in rural areas where access to training and services is often limited.”

–Elizabeth Stripling, EdD, assistant director of outreach and training at the Center for Autism and Related Disorders PotentialMag.KennedyKrieger.org

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Bridging the Gap (continued)

“By doing an initial screening with telemedicine, we are getting patients to the right therapist and other specialists faster.”

–Dr. Deepa Menon, Neurologist at Kennedy Krieger

concerns. The initiative also launched a telepsychiatry program to offer direct evaluation of patients at a pilot site in Crisfield, Maryland, in Somerset County, an underserved area on the Eastern Shore. hyperactivity disorder, or other neurodevelopmental issues. Kennedy Krieger physicians Deepa Menon and Anna Maria Wilms Floet provide two-way video consultations with the patients from our telemedicine suite in Baltimore. Families have access to neurodevelopmental experts without the time and expense of a full day of travel.

“By doing an initial screening with telemedicine, we are getting patients to the right therapist and other specialists faster,” says Dr. Menon. This is especially important in certain cases such as children with an autism spectrum disorder, since early intervention is critical to improving outcomes.

The telemedicine partnership has also led to training on topics of interest for community healthcare professionals on the Eastern Shore.

Behavioral Health The Institute is also working to address the lack of access to pediatric mental health providers due to a shortage of child psychiatrists. Kennedy Krieger child psychiatrist Joyce Harrison, medical director of the Maryland Behavioral Health Integration in Pediatric Primary Care (B-HIPP) initiative, collaborates with colleagues at Johns Hopkins and the University of Maryland in a state-funded program to offer telephone consultation and training to primary care physicians who see children with psychiatric

Parent Education and Support Families whose children are diagnosed with an intellectual or developmental disability often have many questions and concerns. The Maryland Center for Developmental Disabilities holds information sessions on the Eastern Shore for parents searching for answers and guidance. Topics cover available resources, how to advocate for your child, understanding the IEP process, knowing your rights under federal and state laws, bullying, and transition planning. The center is also actively partnering with a number of organizations on the Eastern Shore to help further meet the needs of the community by co-sponsoring free, annual conferences for parents and caregivers raising children with disabilities, working with the Bay Area Center for Independent Living through a grant from the Maryland Department of Disabilities, and working with selfadvocates from the Eastern Shore through their support of People On the Go staff.

Families of Kennedy Krieger patients, including those on the Eastern Shore, may qualify for advocacy and legal services through the center’s Project HEAL (Health, Education, Advocacy, and Law). Project HEAL attorneys help low- to moderate-income families obtain appropriate special education and related services or Supplemental Security Income, for example.

“It is very difficult for families to obtain free or lowcost legal services in special education matters on the Eastern Shore, so we represent as many families as possible given our limited resources,” says Maureen van Stone, director of Project HEAL. “We achieve some of our most notable outcomes in these special education matters.” n Kristina Rolfes

To learn more about the Institute’s initiatives for families on the Eastern Shore, visit PotentialMag.KennedyKrieger.org/EasternShore.

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research frontiers

Talking Trauma

Q&A with Joan Kaufman, PhD, new Director of Research at the Center for Child and Family Traumatic Stress

Joan Kaufman, PhD, is the director of research at the Center for Child and Family Traumatic Stress at Kennedy Krieger Institute, and also holds appointments in Psychiatry and the Johns Hopkins Bloomberg School of Public Health.

Your work focuses on children who have experienced trauma, such as abuse or neglect. How does your research aim to understand and help these children?

The goal of our research is to better understand risk and resiliency in traumatized children, and to utilize what we learn to develop more effective interventions and social policies. One area we’re looking at is how genetic and environmental factors interact in maltreated children.

People used to think of genes as fixed and static, but what’s emerged in recent years is how dynamic the interplay is between genes and the environment.

Different experiences can alter gene expression. These epigenetic changes—chemical modifications, not a change in DNA sequence—are relevant in predicting which children go on to develop problems like depression. What’s exciting is that positive things in the environment, such as stable social supports, can reduce the risks associated with a history of traumatic stress and genetic vulnerability.

What are the effects of early childhood traumatic experiences?

Adverse childhood events increase the risk for psychiatric and substance abuse diagnoses, and is associated with changes in the brain systems implicated in these disorders. It can also increase risk for physical health problems, such as obesity, cardiovascular disease, diabetes, and even cancer.

Are the problems that result from trauma preventable or treatable?

Absolutely, but we are only in the early stages of understanding how genes and environment influence

risk for psychiatric and medical health problems following early adversity. However, it is a time for optimism as emerging data suggests that medications, psychotherapy, and alternative treatments like yoga can ameliorate the negative brain changes associated with “In the aftermath childhood trauma.

of the unrest in Baltimore, we How does community are committed to working violence impact more broadly with the children? community to meet the When children witness community violence, they needs of those who don’t have an increased risk for traditionally come through post-traumatic stress disorder and other mental health our doors.” problems. In the aftermath –Joan Kaufman, PhD of the unrest in Baltimore, we are committed to working more broadly with the community to meet the needs of those who don’t traditionally come through our doors, and are seeking resources to expand these efforts.

What brought you to Kennedy Krieger?

It’s really the clinical infrastructure that makes me so excited about being here. Our center provides the best available evidence-based trauma treatments, but there are no treatments in psychiatry that work for all patients.

We are excited about the prospect of bringing tools from neurobiology to social policy to learn how to better help all children reach their potential—no matter what they’ve been through. n Kristina Rolfes

To learn more about research initiatives at Kennedy Krieger, visit KennedyKrieger.org/Research.

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In My own words

Ready

In My Own Words: Kylie Himmelberger

to Launch Guillain-Barré syndrome (GBS) took away my independence. The disorder left me partially paralyzed and robbed me of my ability to walk, talk, and even eat. But thanks to Kennedy Krieger’s International Center for Spinal Cord Injury, I got my independence—and my lifelong dreams—back.

In January 2014, I became an inpatient at Kennedy Krieger. From the start, a team of supportive doctors, nurses, and therapists helped me come up with treatment goals. I was scared at first. I broke down at my first full session because I didn’t want to accept my loss of independence and the turn my life had taken.

I didn’t know if I would ever be able to do the things I love, like shop and play sports. I had always dreamed of being an officer in the Air Force, but now I didn’t know if I would have the strength or ability to meet all of the physical requirements. I didn’t even know if I was going to regain basic life skills.

But I quickly realized the only way to get better, and be independent again, was to work hard. So that’s what I did.

Therapists coached me through three daily rehabilitation sessions, incorporating video games, pool sessions, and sports into the process. I was having so much fun that at times, I forgot I was actually doing work!

My therapy team even molded my rehabilitation sessions around the U.S. Air Force fitness requirements, knowing how important this goal was to me. After more than a month of inpatient therapy and then outpatient therapy, I made tremendous progress.

I am now fully recovered, with no lingering effects from my bout with GBS. In some ways, I’m actually better off. I have more passion and drive in my life since I experienced losing everything. I am humbled and feel extremely blessed.

Today, I am a senior accounting major at Virginia Tech and am very active within the Corps of Cadets and Air Force ROTC, as well as the women’s club basketball team. In the fall, I ran in the Baltimore Running Festival with Team Kennedy Krieger. I recently graduated from Air Force Field Training, and am on track to commission as an officer into the Air Force as a second lieutenant. If it wasn’t for everyone, from the nurses and doctors to the therapists and even other patients, pushing me and supporting me every step of the way, I would not be where I am today. The people at Kennedy Krieger genuinely cared for me and always considered my feelings and needs. I can’t thank Kennedy Krieger enough for giving me my life back.

Learn more at PotentialMag.KennedyKrieger. org/Kylie.

”Thanks to Kennedy Krieger’s International Center for Spinal Cord Injury, I got my independence—and my lifelong dreams—back.”

–Kylie Himmelberger Kylie Himmelberger, 21, made a full recovery from GuillainBarré syndrome, a disorder in which the immune system attacks part of the peripheral nervous system, at the Institute’s International Center for Spinal Cord Injury. (left) Kylie (front) leading the Virginia Tech Corps of cadets.

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news briefs & events

Saturday, April 30, 2016 Oregon Ridge Park, Cockeysville, MD

Join us for a 5k run, low-mileage fun walk, and family festival to help kids at Kennedy Krieger. New! ROAR for the cause of your choice to support kids, research, and programs at the Institute.

Visit ROARforKids.KennedyKrieger.org to register and start a team.

Kennedy Krieger Student Invited to White House, Meets Pope Jake Edwards, a student at our Montgomery County school, was named a “Champion of Change” by the White House in September and recognized for his work educating law enforcement about autism.

Jake met Attorney General Loretta Lynch and Vice President Joe Biden, and participated in a panel discussion with law enforcement officials from across the country. Two days later, Jake had the opportunity to meet the Pope during his visit to Washington, D.C. Jake’s week was highlighted on “Good Morning America.”

Congratulations to Jake on his incredible achievements!

Interactive Autism Network Approved for $1.6 Million Funding Award by PCORI The Interactive Autism Network (IAN), a project of Kennedy Krieger supported by the Simons Foundation, was approved for a three-year $1.6 million funding award by the PatientCentered Outcomes Research Institute (PCORI) to be part of PCORnet, the National Patient-Centered Clinical Research Network. The PCORI award will support IAN’s efforts to bring together the autism community and researchers in an online environment designed to accelerate ASD research.

IAN (IANCommunity.org) is the nation’s largest online autism research initiative.

Progress Report View recent news, updates, and accomplishments.

Learn how Kennedy Krieger’s researchers, educators, clinicians, and advocates are finding the keys to help our patients and students unlock their potential.

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

Visit KennedyKrieger.org/Finding-The-Keys.

PotentialMag.KennedyKrieger.org

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Help us find the keys to unlock his potential Make your year-end, tax-deductible gift today! When you give to Kennedy Krieger Institute, you’re helping us find the keys to unlock the potential of kids like Christian. 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 magazine, or online at KennedyKrieger.org/YE2015.

Christian, age 13, with his service dog, Trevor. Read Christian’s story on page 6.

Why we give “We give because we are so grateful to Kennedy Krieger for saving our daughter and returning her ability to walk. We went from having zero hope to having her live a completely normal life…The attitude at Kennedy Krieger is amazing—they never give up on kids.”

–Michael & Beth McGinn with daughter Ellie

There’s still time to make your year-end, tax-deductible gift!