potential A publication of Kennedy Krieger Institute
Spring | Summer 2018
VISIONARY LEADERSHIP 30 YEARS OF DEDICATION Gary W. Goldstein, MD
Determined to Walk
Long Journey for Big Strides
Thriving Despite Sickle Cell
All in a Dayâ€™s Work!
Coordinating Patient Care
We are all born with great
Shouldn’t we all have the chance to achieve it?
A publication of Kennedy Krieger Institute
Spring | Summer 2018 Volume 18, No. 1
INSPIRING POTENTIAL Back in the Game Ben was hit by a car when he was 8. His brain was injured, and he had to relearn how to do everything. Now, Ben is in college.
Letter from our
President At Kennedy Krieger Institute, we provide children with the specialized, interdisciplinary care they need. Our care management team, for example, helps patients and families with pre-admission, discharge and everything in between to ensure seamless delivery of care. Their role illustrates well what everyone at the Institute dedicates themselves to, every day: personalized, coordinated care that improves lives. In this issue, we shine a spotlight on our care management team and several of our patients: Julia, who travels here from Canada every year for a week of intense physical therapy; Tashamere, who has sickle cell disease and has been coming to Kennedy Krieger for years; and college student Ben, who came for rehabilitation following a brain injury when he was 8. Sadly, Paul Siegel, a patient at Kennedy Krieger for the past two decades and the author of “Giving Back, Making a Difference” (page 14), passed away unexpectedly on May 17. Paul was an amazing young man, and his hopeful spirit, heartfelt generosity and dedication to the Institute will not be forgotten. I invite you to read Paul’s story and take to heart his mission to make a difference in the world by giving back to those who helped him. Perhaps he will inspire you to think of a creative way in which you, too, can give back by making a difference. It’s been my privilege to serve this incredible institution— and its children and families—for the past 30 years, as we’ve grown to serve more than 24,000 patients a year. As I step down from my current roles this summer, I’m confident the Institute will continue to help thousands more children and families for decades to come. Thank you so very much for your support, Gary W. Goldstein, MD President and CEO
Determined to Walk Julia and her family travel all the way from the west coast of Canada so Julia can receive therapy at Kennedy Krieger.
Team Tashamere Doctors and family members are helping Tashamere live a life full of laughter, good grades, dancing and excitement for the future.
Putting Children First For 30 years, Dr. Goldstein has guided the Institute with visionary leadership and steadfast commitment to its children and families.
DONOR SPOTLIGHT Helping From Miles Away The Fergusons, who live in New Zealand, were inspired to give by those working to find a cure for their son’s rare disease.
PROGRAM SPOTLIGHT All in a Day’s Work! At Kennedy Krieger, a dedicated team coordinates care for patients, from pre-admission through discharge.
IN MY OWN WORDS Giving Back, Making a Difference Paul set out to raise awareness about a rare neurological disorder affecting him and many others around the world.
NEWS BRIEFS & EVENTS Kennedy Krieger in the news and upcoming Institute events
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For appointments and referrals, visit KennedyKrieger.org/PatientCare or call 888-554-2080. Potential is published by the External Relations Department of Kennedy Krieger Institute, 707 North Broadway, Baltimore, Maryland 21205. Kennedy Krieger Institute recognizes and respects the rights of patients and their families and treats them with courtesy and dignity. Kennedy Krieger Institute provides care that preserves cultural, psychosocial, spiritual and personal values, beliefs and preferences. Care is free from discrimination based on age, race, ethnicity, religion, culture, language, physical or mental disability, socioeconomic status, sex, sexual orientation, and gender identity or expression, including transgender. We encourage patients and families to become active partners in their care by asking questions, seeking resources and advocating for the services and support they need. Email us at PotentialMag@KennedyKrieger.org to update your contact or mailing information. Send an email to Unsubscribe@KennedyKrieger.org or visit KennedyKrieger.org/Unsubscribe to unsubscribe from future Kennedy Krieger Institute communications. © 2018, Kennedy Krieger Institute
On the cover: Dr. Gary Goldstein, who began his tenure as president and CEO of Kennedy Krieger in 1988, steps down from those positions in summer 2018.
Visit PotentialMag.KennedyKrieger.org for more inspiring stories, news and updates.
After Ben’s brain was injured, he had to relearn how to do everything. Now, Ben is in college.
hat happened to Ben the summer he was 8 was every parent’s nightmare: Biking back from the beach to his family’s vacation cottage, Ben was hit by a car. With extensive injuries to his body and brain, he was flown by helicopter to The Johns Hopkins Hospital, where he remained unresponsive for 23 days. His parents, Dave and Joanne, and his brother and sister were beside themselves with worry. “When your child can’t respond to you,” Dave explains, “the fear of the unknown is relentless.” About a month later, he was transferred to Kennedy Krieger Institute’s inpatient hospital. His eyes were open, but he couldn’t yet follow commands, says Dr. Stacy Suskauer, co-director of the Institute’s Center for Brain Injury Recovery, who oversaw Ben’s outpatient care at Kennedy Krieger. Ben’s dedicated team of therapists, nurses and doctors got to work. Slowly, Ben regained consciousness. Before long, he could communicate through blinking—one blink for “yes,” two for “no.” One day, Ben’s dad told him an old joke Ben had found funny before the accident. “And he started laughing!” Dave said. “That’s when I knew things were going to be OK.”
“The day I came home, I thought, ‘I’m back!’” – Ben
Another day, Ben’s therapist pointed to a photo of Ben’s dog and asked him the dog’s name. “Bear,” Ben answered, speaking for the first time since the accident. When Ben could finally sit up—and stay up—on his own without assistance, “there were tears streaming down Ben’s therapist’s face,” Dave remembers, “and Ben was sitting there with this feeling like, ‘I did it!’” Ben’s family marveled at how hard his therapists worked just to get his pinky to move. “With that pinky, he could drive a wheelchair!” Dave thought. But soon, Ben started taking steps—a few at a time, and then he was off, walking across the therapy room with an enormous smile on his face. Ben kept thinking of his siblings— he wanted so much to get better so he could go home and be with them every day.
After Ben’s inpatient stay, he attended the Institute’s Specialized Transition Program, a neurorehabilitation day hospital, for seven months. Every weekday, he did several hours each of therapy and schoolwork. By the next fall, he’d rejoined his classmates at school—and his teammates on the basketball court. One day during a game, he took a shot and scored. The entire gym erupted in applause. In high school, Ben started managing his school’s varsity basketball team. Now 19, Ben recently completed his first year at Messiah College, where he’s majoring in sports management and managing the college’s basketball team. “It’s exactly the sort of thing we always hoped he’d do,” Dave says. “Throughout my recovery, everyone was always saying the same thing: ‘You’re going to make it—just trust yourself,’” Ben says. “They were right.” – LT Visit KennedyKrieger.org/BrainInjuryCenter for more information on the Center for Brain Injury Recovery.
Above, top: When Ben was 8, he was an inpatient at Kennedy Krieger for two months. Above, bottom: Ben’s first day at Messiah College, where he manages the college’s basketball team. PotentialMag.KennedyKrieger.org
Julia and her family travel all the way from the west coast of Canada so Julia can receive therapy at Kennedy Krieger.
ith the strength of a Paralympian, Julia, 4, wheels herself into the therapy gym at Kennedy Krieger Institute. Her smile is contagious; her sense of humor, refreshingly quirky. Her spirit is indefatigable. Her strong arms take her wherever she wants to go in her pint-sized wheelchair, which is perfect for quick maneuvering. At Kennedy Krieger, where her days each include three hours of physical therapy and one of aquatic therapy, she’s forever astounding everyone with her perseverance—especially when, her legs braced and her hands tightly gripping a small walker, she takes tiny step after tiny step, ecstatically calling out, “I’m walking! I’m walking!” When Julia was 17 months old, a blood clot spontaneously formed and pressed against her spinal cord, paralyzing her from the waist down. An MRI taken at a hospital in Vancouver, four hours from her home in British Columbia, revealed the clot had created a lesion compressing her spinal cord. Despite surgery to remove the clot, her spinal cord had been injured, causing paralysis. Julia participates in robotic-assisted gait rehabilitation using the Institute’s G-EO System.
Julia’s parents wanted to do all they could for their daughter. They traveled to Vancouver for physical therapy, and to rehabilitation centers in California. With help from family members and friends, they raised money to buy therapy equipment for Julia to use at home. They searched the internet exhaustively for specific information about pediatric rehabilitation, “and Kennedy Krieger kept popping up,” says her mom, Melissa. “We just knew we had to go to Kennedy Krieger and see what it was all about.”
From British Columbia to Baltimore
Since her injury, Julia has received intensive therapy at Kennedy Krieger three times, each time staying for one to two weeks. On Julia’s first visit to the Institute, in September 2016, she could barely sit up, and she couldn’t get on her hands and knees, says senior physical therapist Meredith Budai. By Julia’s second visit, six months later, “she was sitting up really well,” Budai says, “and she could get onto all fours on her own,” a testament to the therapy Julia does at home with her parents, following the treatment plan
Budai has designed for her. More recently, Julia has been able to activate her abs and hip flexors—muscles needed for walking. At Kennedy Krieger, Julia’s therapies include walking with a walker and leg braces or knee immobilizers; using a treadmill while in a body harness; leg, hip and core strengthening; aquatic therapy; and robotic therapy with the G-EO System, in which Julia is secured in a harness with her feet attached to giant pedals that move up and down to imitate gait. “She’s about the smallest person we can fit in the G-EO,” Budai says. It all makes for a busy, exhausting week, but “Julia works really hard and has a vivid imagination, which makes it easy to incorporate play into all of her therapies,” Budai says.
FRIENDSHIP One of Julia’s best friends is Kristen, 24, a college student from Knoxville, Tenn., receiving therapy at Kennedy Krieger for a spinal cord injury.
“Julia is getting stronger every day, slowly but surely. We know this is a
long process, but she’s doing great!” – Melissa, Julia’s mom
Julia also uses a functional electrical stimulation bike—a stationary bike with electrodes that attach to specific points on her legs to deliver electrical stimulation to the muscles—both at Kennedy Krieger and at home, where her activities also include assisted walking with a walker, weight-supported gait training on a treadmill, swimming, horseback riding, adaptive skiing and daily strengthening. “I keep her on a pretty tight schedule,” Melissa says. “We don’t want to look back in 20 years and say, ‘We should have done more.’”
‘Everything Any Other Kid Does’
Julia’s prognosis is good, partly because of how hard she and her parents work, but also because she’s so young, says Janet Dean, a pediatric nurse practitioner for the Institute’s spinal cord center. “Very young children have a lot of neuroplasticity in the brain and central nervous system, and they’re already wired to learn new things,” Dean says. “Julia will do everything any other kid does—just differently, and she will adapt to these differences.” Julia goes to preschool twice a week and enjoys playtime with her friends and cat, Callie, who likes to pounce on a string attached to Julia’s walker. She enjoys doing arts and crafts, and after a good day’s work, “My favorite thing to do,” she says, “is eat cake!” One morning last winter, while her parents were still sleeping, Julia, eager to start the day, got into her wheelchair all by herself and wheeled away down the hall to her parents’ room. “Good morning!” she exclaimed jubilantly to her surprised parents. No matter the hours of physical therapy awaiting her after breakfast, she was more than ready to take on the day. – LT Visit SpinalCordRecovery.org/Video to watch videos about Julia and Kristen and other patients receiving therapy for spinal cord injuries at Kennedy Krieger, and to learn more about the International Center for Spinal Cord Injury.
Julia (left) and Kristen (right) became friends at the Institute.
The day Kristen and Julia met, in September 2016, “I rolled off the elevator and saw the cutest little girl sitting in a wheelchair,” Kristen says. “I asked her if she wanted to read a book with me.” Julia said “yes,” and a special friendship was born. “They have this bond, this instant connection,” Julia’s mom explains. “I’m not afraid to say I’m best friends with a 4-year-old,” says Kristen, whose lower-body paralysis was caused by transverse myelitis, an inflammation of the spinal cord, and who also has juvenile arthritis. At Kennedy Krieger, Kristen and Julia use their walkers together and motivate each other. “If we’re in different parts of the gym,” Kristen says, “I can hear her calling out, ‘Go Kristen! You’re walking!’” “Julia motivates and inspires me more than she will ever know”—she’s always smiling, “giving her best, never complaining,” Kristen says. “When I’m struggling or having a bad day, I think of Julia.” 5
Together, doctors and family members are helping Tashamere live a life full of laughter, good grades, dancing and excitement for the future.
TEAM Tashamere M
eeting Tashamere, you’d never guess she’s been admitted to the hospital more than two dozen times. At 13, she’s a lively, vivacious teenager who loves gymnastics and modern dance and has the biggest smile.
But every year or two, she gets an MRI scan done of her brain, and once a month, she misses half a day of school to receive a vital blood transfusion. Her mom, Inetta, takes her to The Johns Hopkins Hospital, where she’s transfused with about two to three units of blood. Tashamere has sickle cell disease, an inherited blood disorder that, untreated, can cause crises of intense pain and lead to stroke. She also has attention deficit hyperactivity disorder (ADHD), which can frequently co-occur with sickle cell disease, explains Dr. Eboni Lance, Tashamere’s neurologist and medical director of Kennedy Krieger Institute’s interdisciplinary Sickle Cell Neurodevelopmental Clinic.
Before 2012, when Inetta became Tashamere’s foster mom, Tashamere didn’t always get the treatment she required. But she’s flourished under Inetta’s love and care. Her blood transfusions keep her from experiencing a stroke or pain crisis, and regular appointments with Dr. Lance ensure she gets the neurological attention she needs. “Tashamere is receiving all the treatments necessary to protect her body and brain,” Dr. Lance says, “and she’s thriving.”
WHEN CELLS SICKLE With sickle cell disease, the body’s hemoglobin—the protein in red blood cells that carries oxygen throughout the body—is stiff and sticky, and doesn’t carry oxygen well. When red blood cells lose oxygen, they contract into a sickle shape that, combined with hemoglobin’s stickiness, can make the cells clump up
When Tashamere was 7, Inetta mentioned to Dr. Casella that Tashamere’s behavior was often disruptive. Dr. Casella referred Tashamere to Dr. Lance for evaluation, and since then, Dr. Lance has worked with Dr. Casella to oversee Tashamere’s medical and mental health care.
and block blood vessels, potentially causing a pain crisis, explains Dr. James F. Casella, Johns Hopkins’ chief of pediatric hematology and Tashamere’s hematologist since she was 3 months old. Sickled cells can also lead to a silent cerebral infarct—not a stroke, but a possible precursor to one. An MRI scan can reveal whether someone has already had a silent cerebral infarct. “That means we can screen to prevent a stroke,” Dr. Casella says, “instead of waiting for a stroke to happen.” A routine newborn blood test led to Tashamere’s sickle cell diagnosis. When Tashamere was 4, an MRI scan indicated she had experienced a silent cerebral infarct at some point in her life. A subsequent screening test—a transcranial Doppler, or TCD, which measures blood flow in the brain—showed that her risk of stroke was very high: greater than that of the average patient with sickle cell disease. Dr. Casella, who runs a weekly hematology clinic at Johns Hopkins, started her on blood transfusions to reduce that risk. At the end of every transfusion, only about 30 percent of Tashamere’s blood cells are sickle-shaped. “At that point, the transfusion is very effective at reducing the likelihood of stroke— that’s the power of these transfusions,” says Dr. Casella.
HOW NEUROLOGY CAN HELP It’s not uncommon for people with sickle cell disease to also have neurological conditions like ADHD, seizures, learning disabilities, behavioral or developmental complications, and executive or cognitive dysfunction. The Institute’s Sickle Cell Neurodevelopmental Clinic, which Dr. Lance established in 2014, is one of only a few clinics in the world offering comprehensive neurological and neuropsychological testing, behavioral evaluations, and follow-up recommendations for patients with the disease. Dr. Lance is leading two research studies that, she hopes, will help better explain the connection between sickle cell disease and the neurological conditions that so often accompany it.
At every appointment, Dr. Lance screens Tashamere for any medical or mental health conditions, checks up on how she’s doing, and makes sure her medications for ADHD aren’t interfering with her treatment for sickle cell disease. Occasionally, Dr. Lance recommends adjustments in medication type and dosage to Tashamere’s psychiatrist. A few years ago, she provided documentation to ensure Tashamere would receive the accommodations she needed to shine at school. If Dr. Lance ever notices any changes in Tashamere’s behavior or development, she’ll recommend another MRI scan of her brain, and she’ll review the scan with Dr. Casella. Should the scan indicate any changes in Tashamere’s brain health, they’ll work together to adjust her treatment plan.
“Tashamere is receiving all the treatments necessary to protect her body and brain, and she’s thriving.“ – Dr. Eboni Lance
A GOOD PROGNOSIS Drs. Lance and Casella say Tashamere has a good prognosis. “She’s been able to come off a lot of the medications she’s been taking,” Dr. Lance says, “and she’s doing really well in school.” Thanks to the care Tashamere receives from her doctors and family members, she’s in good health and gets good grades— almost all A’s and B’s. She’s in seventh grade, and her studies include business, Spanish and pre-algebra. “She says science is her best subject,” says Inetta, who adopted Tashamere in 2016, “and that she wants to be a lawyer when she grows up.” At one point during a recent appointment with Dr. Lance, Tashamere’s face broke into a big smile, as she and Dr. Lance shared a private joke. Inetta couldn’t help smiling too, thinking: “She’s loved, she’s getting the best care, and I really think she’s going to be just fine.” – LT Visit KennedyKrieger.org/SCD to learn more about the Sickle Cell Neurodevelopmental Clinic and to watch a video of Dr. Lance talking about sickle cell disease. Above: Tashamere meets with her neurologist, Dr. Eboni Lance, medical director of Kennedy Krieger’s Sickle Cell Neurodevelopmental Clinic. Left: Tashamere and her mom, Inetta. PotentialMag.KennedyKrieger.org
Putt ng Ch ldren F rst Over the past three decades, Dr. Goldstein has guided Kennedy Krieger with visionary leadership and steadfast commitment to its children and families. t’s 1988, and Dr. Gary W. Goldstein, Kennedy Krieger Institute’s new president and CEO, is taking a walk through the four floors of the Institute’s only building. He wants to get to know the place a little better. He quickly meets up with an 8-year-old boy walking away from his mom and physical therapist. The boy is smiling, excited and very happy. His mom and therapist are crying. “What’s happening?” Dr. Goldstein asks. “This is the first time my son has ever walked,” the boy’s mom answers through tears of joy. Throughout his 30 years at Kennedy Krieger, Dr. Goldstein has never forgotten that boy. The children at the Institute are always foremost in his mind, guiding just about every decision he makes on the job. “Any time he talks about research at Kennedy Krieger, he starts by talking about the children who are living with a serious or rare disease—the children we want our research to help,” explains Dr. Amy J. Bastian, the Institute’s chief science officer. “He always puts the children first.”
Top to bottom, left to right: Dr. Goldstein, with BGE CEO Calvin Butler Jr., cuts the ribbon to open a new playground at the Fairmount campus; Zanvyl Krieger and Dr. Goldstein; Dr. Hugo W. Moser and Dr. Goldstein; Dr. Goldstein and Maryland first lady Yumi Hogan; and Jim Anders, Sharon Earley Reeves, Dr. Goldstein, Lainy LeBow-Sachs and Dr. Michael V. Johnston. 8
A small group of the Institute’s more than 2,500 staff members, of whom Dr. Goldstein is so proud.
When Dr. Goldstein began at Kennedy Krieger, the Institute was seeing about 2,750 patients a year, and educating about 40 elementary school students. Eighteen outpatient programs offered patient services, and the Institute employed a little more than 400 people. Today, as Dr. Goldstein prepares to step down from his current roles at Kennedy Krieger, the Institute sees about 24,000 patients a year and educates close to 600 students, from preschool to postsecondary vocational training. It diagnoses and treats hundreds of diseases of the brain, spinal cord and musculoskeletal system; offers 82 outpatient programs; provides services at multiple locations; and runs three school campuses. More than 2,600 employees now work at the Institute, while hundreds of doctors, therapists, nurses, researchers and teachers receive training at the Institute each year. The extraordinary growth of the past three decades means more children than ever before are receiving the medical, therapeutic and educational care they need. Guiding that growth has been Dr. Goldstein.
A Visionary “It was an easy choice,” selecting Dr. Goldstein as the Institute’s sixth president, says Michael J. Batza Jr., a board member for the past 38 years, board chair at the time Dr. Goldstein was hired, and a member of the committee that selected Dr. Goldstein. “We chose the absolute best person for the job.” “Gary is a visionary,” Batza adds. “He’s always looking forward— that’s his greatest contribution to the Institute.” “The first thing Gary did was the opposite of what many new executives do,” recalls Dr. Michael F. Cataldo, director of the Institute’s Department of Behavioral Psychology and a Kennedy Krieger employee for the past 40 years. “Instead of changing things, he listened.” His new co-workers told him they needed more space for their work. The four-story building wasn’t enough. The elementary school occupied just a few rooms on the second floor, and its teachers constantly worried about how their students would fare in mainstream middle schools. The research labs, outpatient center, inpatient hospital and administrative offices were bursting at the seams. Within a year, Dr. Goldstein had orchestrated the Institute’s first expansion: Just as he was securing a substantial donation to the Institute from Zanvyl Krieger, a Baltimore businessman and Institute board member, a large city school building went on the market just three blocks away. Two weeks later, thanks to that donation, the building was part of the Institute. And that was just the beginning—more than half a dozen major buildings have become part of Kennedy Krieger over the past 30 years, giving researchers and clinicians room to expand their work. “Our long-range plan was never about building buildings,” Dr. Goldstein explains, “but about expanding programs, with a balance between research, school and clinical care.”
The Right People “Gary’s other great contribution has been his ability to recruit, motivate and retain key individuals,” Batza says, “which isn’t always easy in such a creative and diverse, complex environment like Kennedy Krieger.” Dr. Goldstein’s management approach has been the opposite of that of many institutions: After recruiting the best people for key leadership positions, he’s encouraged them to develop programs following their own instinct and initiative. “Thanks to Gary, we function very differently from about 99.9 percent of nonprofits, and that works to our advantage,” explains Jim Anders, the Institute’s executive vice president and chief operating officer for the past 30 years. “He’s essentially allowed people who were already highly capable of acting entrepreneurially to do just that, without a whole lot of restrictions,” Dr. Cataldo says, “as long as the evidence is there, showing they’re making progress.” The result is “an innovative, open environment where people can really optimize their skills and passions,” says Dr. Harolyn M.E. Belcher, director of the Institute’s Center for Diversity in Public Health Leadership Training. And “Gary is always looking for opportunities to connect people,” adds Dr. Bastian, whom Dr. Goldstein recruited in 2001. “When you’re focused so intently on your own research, it’s easy to feel boxed in, and it can be hard to make the connections you need to further your research. But that’s where Gary comes in—he’s really good at making those connections.” >>
“Gary is an extremely honest, humble and self-effacing leader who cares deeply about the Institute’s employees, work and mission. He’s also a brilliant scientist and an excellent physician and pediatric neurologist. He really has been the perfect person to have led the Institute for the past 30 years.” – Dr. Michael V. Johnston, executive vice president and chief medical officer for Kennedy Krieger
Through his steadfast commitment to the Institute’s mission, Dr. Goldstein has helped thousands of children live their lives to the fullest. M e g ha n
Putting Children First (continued from page 9)
Groundbreaking Research “Undergirding everything has been the philosophy that if we really want to improve the lives of children with disabilities, we’ve got to do research,” says Dr. Nancy S. Grasmick, co-director of the Institute’s Center for Innovation and Leadership in Special Education, and member and rising chair of the board. When Dr. Goldstein began his tenure at the Institute, research funding was only around a million dollars a year. Now, it receives more than $30 million a year in research funds. Among the achievements of Kennedy Krieger’s researchers over the past three decades are the isolation of the gene causing Sturge-Weber syndrome, the development of treatments for leukodystrophy and muscular dystrophy, and the development of infant tests for autism, urea cycle disorders and adrenoleukodystrophy. “Dr. Goldstein also made the fundamental decision to give up his own research and focus instead on the needs of the Institute,” adds Ann B. Moser, co-director of the Peroxisomal Diseases Laboratory at Kennedy Krieger and Johns Hopkins. It was a tough decision to make, as Dr. Goldstein had trained—and had been practicing for some years, most recently at the University of Michigan’s medical center—as a pediatric neurologist. Other medical specialties, he’d found as a medical student, relied heavily on examining test results and X-rays, but with neurology, “you’re watching how a child walks, and you’re talking with the family to get the history and figure it out,” he says. He liked the person-centered nature of the field.
“It never crossed my mind to be a heart doctor or a surgeon,” he adds. “My skill set and personality just seemed best suited to pediatric neurology.” Mikey
A Culture That Permeates Dr. Goldstein’s persistent dedication to improve children’s lives is deeply felt and shared by employees across the Institute. “There’s a culture that really permeates this place, and it’s the commitment we all have to Kennedy Krieger’s mission,” Dr. Goldstein says. “It’s reflected at every level of the Institute, and it’s not because of me—it’s because of everyone here.” As Howard B. Miller, a board member for the past 29 years and board chair for the past four, says, “We’re always thinking, ‘What do we need to do to make their lives better?’ It’s ingrained in everybody.” “A lot of people have stayed here for decades,” adds Dr. Belcher, who’s worked at the Institute for 20 years, “because of this feeling, this esprit de corps.” Today, scenes like a child walking for the first time after years in a wheelchair are not uncommon at all. Every day brings new advances: A little girl smiles for the first time after severe psychological trauma. A teenager reads aloud with tears in his eyes because he’s never been able to read aloud before. Cheers erupt as a little boy regains consciousness and smiles at his family for the first time in months.
Above (bottom to top): Dr. Goldstein (center) with (left to right) Jennifer Doyle, Dr. Arlene Forastiere (Dr. Goldstein’s wife), Mark Furst, Lainy LeBow-Sachs, Raymond Short, Dr. Nancy Grasmick, Jay Newman and Steve Tuttle; Dr. Goldstein (center) with Paul Siegel (left) and Dr. Anne Comi. 10
Things like this happen all the time at Kennedy Krieger—and thanks, in part, to Dr. Goldstein’s visionary leadership, they’ll continue to happen for decades to come. – LT Visit KennedyKrieger.org/ Goldstein to watch a video tribute to Dr. Goldstein.
1987 Total Patients Served
Outpatient Appointments Special Education Students Enrolled
< $1million $17 million
Faculty and Employees Facilities (sq. ft.)
Number of Clinical Programs Research Funding
563 82 >$35 million $253 million
Above: New Zealand family Liz and Duncan Ferguson and their children, (left to right) Lucia, Bella, Marco and Christopher. Left: Marco plays at the pool during a family vacation.
Helping From Miles Away
hen Marco, 7, was a baby, the only hint of his rare genetic condition was the slightly larger-than-typical diameter of his head. Once he was walking, he began getting painful leg cramps, often several times a day.
An MRI revealed Marco might have LBSL, short for leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation, a progressive disorder. A blood test confirmed the diagnosis. Marco’s parents, Liz and Duncan Ferguson, wanted to learn all they could about LBSL. Duncan, a surgeon, helped the rest of the family understand what having LBSL meant: Marco’s mitochondria were unable to manufacture all the energy his cells needed to stay alive. “The initial diagnosis was grim,” he says. Due to the extreme rarity of LBSL, Marco’s family found that no doctors in New Zealand, where the family lives, had any clinical experience with the condition. Research on the internet led them to discover A Cure for Ellie, a nonprofit founded by Beth and Michael McGinn to raise money for LBSL research at Kennedy Krieger Institute. The McGinns, whose daughter Ellie has LBSL, put the Fergusons in touch with Dr. Ali Fatemi, director of the Institute’s Moser Center for Leukodystrophies. A “cocktail” of supplements and nutrients keeps Ellie’s mitochondria going, while researchers like Dr. Fatemi study LBSL, with the hope of one day developing a cure. Marco is now on a similar cocktail, and his legs are mostly cramp-free. In 2015, after attending a conference in Australia, Dr. Fatemi visited the Fergusons at their home. Hearing Dr. Fatemi talk
The Fergusons were inspired to give to the Institute by those working to find a cure for their son’s rare disease.
so passionately about his research and vision for a future in which LBSL can be cured, and in gratitude to the McGinns for connecting them with Dr. Fatemi, the Fergusons were inspired to match, dollar for dollar, whatever the McGinns raise each year for LBSL research. This past March, the family traveled to Kennedy Krieger for the first time to attend a conference co-hosted by the Institute for families affected by LBSL. It was the first such conference ever held, and it was the Fergusons’ first time meeting the McGinns in person.
“We hope to help those with LBSL live full and independent lives.”
“We wanted,” Duncan says, – Liz and Duncan Ferguson “to contribute to and support the tireless efforts of the McGinns to raise the profile of this condition and help drive the pursuit of a potential cure.” – LT Visit KennedyKrieger.org/MoserCenter to learn more about the Institute’s Moser Center for Leukodystrophies. Visit KennedyKrieger.org/GR18 for more inspiring donor stories. PotentialMag.KennedyKrieger.org
ALL IN A
DAY’S WORK! AT KENNEDY KRIEGER, A DEDICATED TEAM COORDINATES CARE FOR PATIENTS, FROM PRE-ADMISSION THROUGH DISCHARGE.
fter carefully preparing for a patient with complex medical needs to begin treatment at Kennedy Krieger Institute—gathering referrals and insurance approvals, reviewing medical records and assembling an interdisciplinary care team—nurse clinical care manager Angela Huff can’t wait to meet the patient when he or she arrives at Kennedy Krieger. “I’m so focused on helping our patients get the treatments they need,” says Huff, who works with patients coming to Kennedy Krieger for treatment at the Institute’s International Center for Spinal Cord Injury. “Seeing them here is one of the best parts of my job.” Every year, 24,000 patients and their families—from all over the country and around the world—come to Kennedy Krieger for treatment. Parents often need help determining which specialists their child should see, understanding insurance benefits, and planning their trip to the Institute. That’s where Kennedy Krieger’s team of 13 care management specialists—10 nurse clinical care managers and three full-time patient care coordinators—comes in. The team ensures that every patient has the necessary paperwork on file, appointments scheduled, and an interdisciplinary care team lined up and fully informed about the child’s medical history and treatment goals before the child arrives. “Our aim is to make a family’s time at the Institute as stress-free, therapeutic and seamless as possible,” says Jody Luttrell, the Institute’s director of nursing care management.
Helping Patients and Their Families Sometimes parents of a child with a serious condition are hesitant about traveling far from home, or about traveling again for more treatment. But nurse clinical care manager Maureen Kapinos, who works primarily with families of patients arriving from another hospital for an inpatient stay, truly believes it when she says to parents: “Just wait—just wait until you get here. It’s really awesome.”
“We know you have been behind the scenes, working for [our daughter’s] benefit, and we gratefully appreciate all you have done for us.” – parent
“I tell parents that once their child is here, we make sure they get the best care possible,” adds nurse clinical care manager Kristine Mauldin, who works with families of children attending the Institute’s Specialized Transition Program, a neurorehabilitation day program.
Amazing Things, Happening Daily
All of the nurse clinical care managers are registered nurses, and most were nurses at Kennedy Krieger before joining the care management team. “Even though we’re not providing hands-on care, we use our ‘nurse brains’ all the time,” explains Luttrell, who in 1989 became the Institute’s first—and at that time, only—nurse clinical care manager. With their nursing background and expert knowledge of Kennedy Krieger’s various programs, they’re able to quickly and accurately assess a child’s needs, and help organize and communicate a treatment plan. The care management team works with every child receiving treatment at the Institute’s inpatient hospital, day hospital and spinal cord injury center, coordinating care throughout a child’s admission as part of a larger interdisciplinary team. They also coordinate a child’s discharge starting at pre-admission: Newly injured and chronically ill patients need special equipment, referrals for resources and careful discharge planning. The team also works with many families of children coming from far away to Kennedy Krieger as outpatients, coordinating a child’s multiple appointments—often with several doctors and therapists, and typically taking place within a short time frame— to ensure all providers are in communication with one another. Care management for outpatients is not typically offered at medical institutions, Luttrell says, but is critical at Kennedy Krieger because of the wide variety of conditions—many of them extremely rare—the Institute treats.
Care management team members are instinctively attuned to the unique needs and situation of each family. “We truly empathize with the stress and trauma each family is going through,” Luttrell says. “It’s very humbling, as well as an honor,” adds nurse clinical care manager Heather Dean, who works with families of patients coming to the Institute’s inpatient hospital from home, “to walk alongside a family going through such a difficult time.” “But when you see one of the patients you’ve worked with walk again, or demonstrate a skill his or her parents worried had been lost, it’s extremely rewarding,” nurse clinical care manager Courtney Dunlow explains. Dunlow works—typically through interpreters—with families coming to the Institute from abroad, often coordinating arrivals and departures with the embassies representing patients’ home countries. “It’s so satisfying to see patients getting better, advancing through treatment, and living their lives to the fullest,” adds nurse clinical care manager Lisa Trotta, who works with patients coming to the spinal cord injury center. One of Luttrell’s favorite places to show to families considering coming to Kennedy Krieger is the Institute’s Child Life and Therapeutic Recreation room, where “there might be 15 children, all smiling and having a lot of fun. “It’s not an unusual sight for us, but the families are so amazed. They can hardly believe what they’re seeing. It’s a privilege to show them what’s possible, and then help them once they’re here.” – LT Visit KennedyKrieger.org/PatientCare for more information on patient care at Kennedy Krieger.
Above, left: Nurse clinical care managers (back to front, left to right) Courtney Dunlow, Lisa Trotta, Heather Dean, Angela Huff, Kristine Mauldin, Maureen Kapinos, Barbara Bristol, Jody Luttrell and Pam Kramer. Above, right: Trotta and Huff talk with Melissa, Julia’s mom (see story, page 4). Opposite page and left: Mauldin checks in with Lydia (opposite page) and Channell (left), both patients at Kennedy Krieger’s day hospital.
IN MY OWN WORDS
Paul Siegel passed away shortly before this magazine went to press. We’re grateful to Paul for his generosity and kindness. He inspired all who knew him.
GIVING BACK, MAKING A DIFFERENCE By Paul Siegel Paul’s mission: to raise awareness about a rare neurological disorder affecting him and many others around the world.
was barely a day old when I was diagnosed with Sturge-Weber syndrome (SWS), a neurological disorder, 36 years ago. Seventy-five percent of my body was—and still is—covered with port-wine birthmarks. I went on to develop seizures, migraines, glaucoma and many other health issues. No one knew what caused SWS back then. Growing up, making friends was a challenge. It’s still hard for me to stay positive and not be bothered by all the stares I get— they make me feel like I’m being judged. I’ve often thought to myself: This needs to change—not just for me, but for everyone with SWS. People are confused when they see me. We need to increase awareness about SWS, and we need better treatments. My mother, a nurse, was never satisfied with the care I received as a child. By the time I was 14, my seizures were out of control, and the medications I was on were not working for me. That was when mom found an internet listing for Dr. Anne Comi at Kennedy Krieger Institute. “Her research is in Sturge-Weber,” mom said. “We need to see her!” At my first appointment, Dr. Comi was so friendly, informative and receptive to both me and my mom. I didn’t feel like just a patient with her; I was an individual. She explained how SWS was affecting me, and devised a treatment regimen just for me. I’m still her patient today, and I don’t make any health-related decisions without her blessing.
Above: Paul Siegel, pictured recently, and when he was a child. Right: Paul Siegel and Al DeCesaris. 14
In my late teens, when I started participating in medical studies on SWS, I started thinking about how I could give back. Every new SWS study and treatment that came out made me more resolved to do something to help. A few years ago, fueled by Dr. Comi and her research team’s discovery of the cause of SWS—a DNA change in the GNAQ gene—I began selling T-shirts online of my own design. I raised almost $2,500 for the Institute’s Hunter Nelson Sturge-Weber Syndrome Center. But I wanted to do more, to hold a fundraising event—a big one! I decided on a dine-out-forSWS event, and reached out to Al DeCesaris and Ida Heck, of the Celebrate Hope Foundation, which also raises money for SWS research, for advice. I’d met them a few years before, when Al was biking across the country to raise awareness about, and funds for, Dr. Comi’s research. They encouraged, helped and supported me 100 percent. I started planning, scoping out locations online, finally settling on The Nickel Taphouse in Baltimore. I was promoting and inviting like crazy! There was no way this wasn’t going to be a success, especially with Al and Ida helping me. People were going to know about SWS and the Hunter Nelson center, and all the great work it does. We raised $1,000— and a lot of awareness—for the center that night. I’m already planning my next fundraiser. This is how I can give back. I have to keep trying my best to make a difference. Visit KennedyKrieger.org/SWSCenter to learn more about Sturge-Weber syndrome.
NEWS BRIEFS & EVENTS
Whatever It Takes: A Tribute to Judy Woodruff Join us for a special evening with renowned news anchor Judy Woodruff, featuring conversations on the future of pediatric brain disorder care and research. The event salutes Judy and her family, whose experience supporting their eldest son, who suffered a traumatic brain injury as a teenager, inspired them to shine a spotlight on pediatric brain disorders. The event takes place on Wednesday, October 10, at 6 p.m. at the Capital Hilton, in Washington, D.C. Event proceeds will benefit Kennedy Krieger Institute and Joey’s Foundation. For more information about sponsorships or tickets, visit the event’s website (KennedyKrieger.org/Judy); email Jennifer Doyle, director of leadership giving (DoyleJ@KennedyKrieger.org); or contact the Office of Philanthropy (443-923-7300).
News anchor Judy Woodruff is an advocate for pediatric brain disorder research.
Festival of Trees November 23–25, 2018 Maryland State Fairgrounds
Team Kennedy Krieger Join Team Kennedy Krieger on Saturday, October 20, as we hit the streets of Baltimore for the annual Baltimore Running Festival. Whether your specialty is the 5K, team relay, or half or full marathon, we’ve got space for you! Team Kennedy Krieger participants who commit to raising $250 get FREE registration. All funds directly support Kennedy Krieger patients, some of whom will be on the team. Visit KennedyKrieger.org/BRF for more information. We hope to see you there!
Kennedy Krieger is gearing up for its 29th annual Festival of Trees, the largest holiday-themed festival of its kind on the East Coast, and the unofficial kickoff to the holiday season. Please consider supporting this event by: • Being an event sponsor • Volunteering at the event • Entertaining the crowds from the stage • Designing a tree, wreath or gingerbread house • Donating an item (or items) for the silent auction • Reserving a vendor space For more information about the Festival of Trees, please visit FestivalofTrees.KennedyKrieger.org or contact the special events team at 443-923-7300.
A ROAR-ing Success Kennedy Krieger’s annual spring fundraiser ROAR for Kids featured a new jungle theme this year; included a 5K run, low-mileage walk and Jungle Festival; and raised more than $140,000 for the Institute. Visit the gallery at KennedyKrieger.org/ROARPics to see photos from the event.
Join us on social media! Visit: KennedyKrieger.org/Connect PotentialMag.KennedyKrieger.org
NON-PROFIT U.S. POSTAGE
PERMIT #7157 BALTIMORE MD
707 North Broadway Baltimore, Maryland 21205
Help us find the keys to unlock her potential. When you give to Kennedy Krieger Institute, you’re helping us find the keys to unlock the potential of kids like Julia. Your gift will support groundbreaking research that brings hope, and innovative care that transforms lives. Thank you so much for your support!
Donate today using the return envelope inside this issue, or online at: KennedyKrieger.org/PS18
Julia receives treatment for a spinal cord injury at Kennedy Krieger. Read her story on page 4.
WH Y I GI V E “With the right resources, Kennedy Krieger Institute can continue to do the important work it’s been doing all along. I have faith Kennedy Krieger can improve longevity and quality of life for the children it treats. That’s why I give.” – Jesse Brown, medical researcher and longtime donor
The Institute's magazine, Potential, informs readers about the latest institute news and advances in research, patient care, special educati...
Published on Jun 4, 2018
The Institute's magazine, Potential, informs readers about the latest institute news and advances in research, patient care, special educati...