International Center for Spinal Cord Injury Updates - Fall 2012

Spinal Cord Injury

Updates

707 North Broadway Baltimore, Maryland 21205

from the International Center for Spinal Cord Injury at Kennedy Krieger Institute

FALL 2012 • Vol. 3, Issue 1 spinalcordrecovery.org

Program Spotlight: W ellness Center Allows for Expanded Access and Health Benefits

A Word from the Director

On behalf of the International Center for Spinal Cord Injury (ICSCI) at Kennedy Krieger Institute, I would like to share with you news of our continued innovative approaches to research and treatment of spinal cord injury.

The benefits of sport and recreational activities for individuals with disabilities are well recognized from both a health and quality-of-life perspective, but often, there remains a lack of accessible activity options in which our patients can engage. For this reason, the International Center for Spinal Cord Injury (ICSCI) recently launched the “Life Through Motion” Wellness Center on the sixth floor of the 801 North Broadway Building.

As always, our clinical team has been very busy! Since opening its doors in June 2005, the ICSCI has evaluated over 2,000 patients. Just since January of this year, the center has had over 10,200 outpatient therapy and medical appointments and treated 589 outpatients, while the inpatient unit has treated over 30 pediatric inpatients.

So many of our patients were coming in to use the Functional Electrical Stimulation bikes during open gym hours that ICSCI decided to create a new space dedicated solely to wellness that offered patients a chance to work on therapy goals in their own time. The launching of the Wellness Center provided the opportunity to expand the available equipment. Wellness Center clients have the use of standers, free weights, and accessible pulley systems for strength training, arm cycles, a treadmill, and an elliptical.

In addition to our very busy clinic, our basic science group continues to advance the spinal cord injury research field, and our investigators are using their substantial expertise in different aspects of regeneration research. In the coming months, you’ll be hearing more about our team’s effort to apply epigenetics research and investigate heritable changes in gene expression that are affiliated with neurological recovery in chronic SCI.

We are excited to partner with Weight Watchers® and encourage individuals to use this program. Studies have shown that commercial programs like the Weight Watchers® program, with its PointsPlus® system, works better than physician/nutritional based programs.

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Greetings from the Therapy Team

INSIDE THIS ISSUE

The goal of the “Life Through Motion” wellness program is to improve the quality of life for those individuals with spinal cord injuries through regular and consistent physical activity. “The accessibility of our wellness center is key. Lack of access is what prevents our patients from walking into a typical gym,” explains Christy Sachs, Adaptive Aquatics Manager and Wellness Program Director. “But here, they feel at ease, and they can work toward their therapy goals with support from our rehab professionals.” Sachs explains that there are overwhelming benefits to clients who use the Wellness Center. The activity can help them improve their strength, flexibility, balance, endurance, and cardiovascular health.

The Paralympic Games

Upcoming Events

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And there’s a social component to the center that clients enjoy. “Patients absolutely love it up here,” says Sachs.

“We’re so excited about this program. And we’d love to see it grow.”

Recent Publications

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Life Through Motion Wellness Center

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For more information about the wellness program, contact Kim Davis at 443-923-9458 or davisKi@kennedykrieger.org

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Program Spotlight: VSail 4 Baltimore Running Festival 7 Employee Profiles

John McDonald, MD Director of the International Center for Spinal Cord Injury at Kennedy Krieger Institute

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Exercise and Spinal Injury 13

This has been an amazing year so far for our team. Things have been very busy, and our patient census has spiked during the summer months. Many of our young patients have joined us for their summer vacations! In addition, we have added a number of staff; currently, we have a total of 45 physical and occupational therapists on the inpatient and outpatient teams. Our talented therapists are from all over the country, but most of us are native Baltimoreans. We’d like to highlight a few staff members; Cara Felter, PT, DPT, MPH, has recently become a Neurologic Certified Specialist (NCS) through the American Physical Therapy Association. continued on page 3

Our Mission

Transitioning today’s science to near-term therapeutic applications, we focus on developing and applying advanced restoration strategies for optimizing spontaneous recovery in those living with paralysis.

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A Word from the Director

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In August, we joined audiences all over the world to watch amazing and awe-inspiring international athletes compete in the 2012 Olympic and Paralympic games held in London. In celebration of these exciting events, ICSCI would like to highlight the importance of wellness, exercise, and activity among the spinal cord injury population. In addition to our activity-based therapy clinical program, the center has launched several wellness and activity programs to further engage and improve the quality of life for spinal cord injured patients, such as our “Hope Through Motion” Wellness Center, our Virtual Sailing Simulator Program, and the training program for the 2012 Baltimore Running Festival ICSCI Charity Team.

We are paving remarkable paths of discovery and fostering unprecedented progress toward paralysis recovery. We thank you for your support of the ICSCI at Kennedy Krieger Institute, and we resolve to do everything possible to improve the quality of life for each and every spinal cord injury patient who comes to us for help.

Cheers,

John W. McDonald, III, MD, PhD Executive Director International Center for Spinal Cord Injury at Kennedy Krieger Institute

The 2012 Paralympic Games Seventeen days after the Olympic games closed, 4,200 athletes from 160 countries gathered in London, England for the 2012 Paralympic Games. From August 29 through September 9, athletes with physical disabilities ranging from blindness and amputations to cerebral palsy and spinal cord injury competed in the largest international multi-sport event specifically for the disability community. In honor of the 2012 Paralympics, we’ve included some “Did You Know?” facts about the Paralympics.

Did you know:

• that the first Paralympic Games took place in 1960 in Rome, Italy?

• that the motto for the 2012 Olympic and Paralympic Games was “Inspire a Generation”?

• that the United States was represented by more than 200 athletes in the 2012 Paralympic Games?

• that there were 20 Paralympic sports on the Summer Paralympic program (and that there are five Paralympic sports on the Winter Paralympic program)?

• that Neroli Fairhall, a New Zealand athlete, was the first Paralympic athlete to compete in the Olympic games?

Fairhall took up archery after her spinal cord injury and competed for New Zealand in the 1984 Los Angeles Olympic Games. She also competed in the 1972, 1980, 1988, and 2000 Paralympic Games.

• that the United States has won the most combined Summer and Winter Paralympic medals since 1960?

• that Trischa Zorn of the United States is the most decorated Paralympian in history? She competed in blind swimming events and won a total of 55 medals, 44 of which were gold.

• that the U.S. Paralympic team finished third in the medal count at the Beijing 2008 Paralympics with 99 medals? http://www2.teamusa.org/US-Paralympics/Features/2012/July/10/The-Countdown-is-on.aspx

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Greetings from the Therapy Team

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Our equipment manager, Erin Michael, PT, DPT, ATP, was one of ten clinicians chosen, nationwide, to speak to congressional representatives to advocate for complex medical equipment. This is quite an honor.

As part of our philosophy at the ICSCI, we use state-of-the-art equipment to provide near-normal input to the spinal cord in order to optimize recovery. In light of this, we have procured some new equipment, including a new generation FES unit and the Saebo Mobile Arm Support, for our patients with decreased upper extremity motor function. For patients with more significant upper extremity involvement, we acquired two eye gaze systems for accessing computers.

In addition to our land therapy, the Mr. and Mrs. Arthur Modell aquatic center is in full swing. Our two HydroWorx pools, with jets, cameras, a treadmill, and a Ferno Hydro Track, have been popular with patients interested in aquatic therapy. Although the aquatics center is run by the ICSCI clinic, its use has been embraced by numerous other Kennedy Krieger programs. Recently, as a part of our wellness initiative, we opened the aquatics center to our Wellness Program participants to independently utilize the pools on Mondays and Thursdays from 12-2 p.m., as well as on Tuesdays and Thursdays from 5-7 p.m. ICSCI has also begun offering adapted swim lessons during those times. We have several veteran/certified swim instructors on staff, and we are excited to offer our services to our patients.

Besides our clinical activities, ICSCI has continued to take a leadership role in training and research. As a part of our Department of Defense contract, ICSCI has partnered with Veterans Administration hospitals in Richmond, Boston, and Seattle to teach them Activity-Based Restorative Therapy (ABRT) techniques. Our therapists and physicians have made site visits to each location to provide intensive training and mentorship on ABRT implementation. This has been augmented by e-learning courses and live web conferences, bringing together different sites. Recently, the project culminated in a weeklong fellowship for practitioners from each partner site.

We’ve also committed to making continuing education for our own clinical staff a top priority for our team. Recent trainings included an ICSCI-hosted PNF Training Course and a Kinesio Taping 1 & 2 training course. We are also excited to note that in June, we hosted the Second Annual Contemporary Trends in Spinal Cord Injury Management Research Symposium at The Johns Hopkins Hospital. The symposium featured keynote addresses by Dr. Diane Damiano from the National Institutes of Health Clinical Care Center and Dr. Keith Tansey from the Shepherd Center. It was attended by over 80 clinicians, researchers, administrators, and students. Also in June, attendees at the annual meeting of the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) visited ICSCI to view our advanced technology and ongoing research.

It’s been a busy year so far for ICSCI, and we are looking forward to the rest of the year as we continue to provide our patients with the highest standards of clinical care and to innovate the spinal cord injury research and training field. Thank you for your continued support.

Cheers, Rebecca Martin, OTR/L, OTD, Manager of Clinical Education and Training Beth Myers, MSPT, ATRIC, Manager of Therapy Services Christy Sachs, Adaptive Aquatics Manager

If interested in either the Independent Aquatics Program (IAP) or swim lessons, call Erik Schlegel at 443-923-9475.

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Operations Update

Spotlight on Research

The ICSCI team remains committed to providing the best medical care, physical and occupational therapy, and customer service possible. Because of this commitment, we are always seeking new ways to improve the program.

The past several months have been very busy times at the ICSCI. As you read through this newsletter, you will get a sense of the many projects and initiatives that are currently in process. These projects are the work of our very energetic and passionate staff, and in most cases they go well above and beyond what is expected of them. It is truly a blessing to be associated with such a talented and motivated team.

The International Center for Spinal Cord Injury (ICSCI) is fortunate to have a dedicated group of basic science researchers investigating the potential means to cure paralysis. Their breakthroughs have significantly added to the spinal cord injury research field, and in this issue of the ICSCI newsletter, we’d like to share with you a specific ongoing research project.

At ICSCI, we believe that it is imperative that our staff have access to the most recent research and the latest technology. The constant flow of information between the research team, our physicians, and our therapists ensures that our clients are always provided the best possible care. We have recently collaborated with several manufacturers to be certain that the products used in therapy or at home are best suited for our clients. In addition, we have recently purchased several new pieces of equipment for our therapy gym that will complement our existing treatment modalities. New talented physical and occupational therapists have been hired to add to our existing team. All of these changes will allow us to reduce wait times and provide therapy for more individuals in a timely manner.

As always, our goal at ICSCI is to continually seek out new and innovative ways to treat spinal cord injury. As we look to the future, the ICSCI team will continue our commitment to improving the life of each person within our program. We recognize that your dedication is the backbone of this program, and we appreciate your support. If you have any recommendations on how to improve our services, feel free to contact me directly and we will consider implementing your ideas. Your thoughts are valued and welcome.

Best Regards, Tom Novotny, Director of Operations

Program Spotlight: V Sail Access Program

Computer-Assisted Sailing Maximizes Therapeutic Benefits If you’ve ever been to the Baltimore Inner Harbor, you’ve seen that sailing is a beautiful Maryland tradition. Sailing is an attractive sport that can be pursued at both a recreational and competitive level. This summer at the London Paralympics, a total of 80 athletes sailed for gold. Sailing for athletes with a disability began to develop as a competitive sport in the 1980s, and in 1996 it was first a demonstration event at the Atlanta Paralympics before becoming a full medal sport at the 2000 Sydney Games.

In 2011, under the direction of Dr. Albert Recio, ICSCI began a pilot therapeutic Virtual Sailing program using a virtual sailing simulator we call the VSail. The VSail is a “ride on” computer-assisted sailing simulator.

VSail offers a safe and realistic sailing experience, while allowing the prospective sailor to learn necessary sailing skills on dry land before heading onto the water.

Functional Magnetic Resonance Imaging (fMRI) Provides New Data for Possible Neurological Recovery

By Visar Belegu, PhD, Ann Choe, PhD, and John McDonald, MD, PhD

The spinal cord is a conduit for the exchange of information between the brain and body. Damage to the spinal cord disrupts sensory and motor signals, causing neurological impairment or paralysis. This disruption is due to the severing of nerve fibers called axons around the injury site, and the loss of axonal covering (known as myelin) that controls the speed at which electrical signals travel down the axon. While most spinal cord injury (SCI) patients have had an MRI (magnetic resonance imaging) in order to obtain structural information about their injury, our ongoing project uses advanced MRI modalities such as diffusion tensor imaging (DTI), magnetic transfer imaging (MTI), and functional MRI (fMRI) to search for structural and functional changes in the central nervous system that are associated with neurological improvements in SCI patients. These technologies are able to provide unique information that is not available using current and more common MRI modalities.

We used DTI, MTI, and fMRI to obtain images of a patient with a chronic cervical spinal cord injury who was able to achieve significant neurological recovery. Our results are remarkable, because we found that the plasticity of the brain enabled functional recovery despite a 62% loss of white matter tissue at the injury center, as well as axonal and myelin abnormalities in the surviving tissue of the cervical cord. This discovery is a breakthrough for SCI patients, because it shows that the brain has the potential to induce functional recovery even in severe SCI. These are exciting breakthroughs, and we are enthusiastic about the future of this research! While use of these MRI modalities is in the experimental stages, we hope to translate these findings into clinical use for the diagnoses of the severity of SCI and other neurological disorders, as well as to monitor treatment during therapeutic interventions.

If you are interested in a lab tour, please contact your therapist or Anna Miglioretti at Miglioretti@kennedykrieger.org or 443-923-9190.

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2012 Baltimore Running Festival

Join the Kennedy Krieger Institute Team!

SATURDAY, OCTOBER 13, 2012 7:00 AM • M&T Bank Stadium KennedyKrieger.org/BaltimoreMarathon Raise at least $250 for Kennedy Krieger’s team and receive: • FREE registration for the Baltimore Running Festival • A team technical shirt • A special participant goody bag • Access to the team tent to secure your belongings • Coffee, breakfast, and post-race refreshments • Fun and camaraderie with the Kennedy Krieger team • Additional special fun and surprises to be announced soon!

Registration is open to all Institute employees, patients, families, and friends.

The funds raised from Kennedy Krieger Institute’s Baltimore Running Festival team will support our spinal cord injury program and the training needs of patients with disabilities who participate in the event.

For more information or to register online, visit KennedyKrieger.org/BaltimoreMarathon, contact events@kennedykrieger.org or call 443.923.7300.

Baltimore Running Festival On October 13, 2012, runners from all over the state will be participating in this year’s Baltimore Running Festival, and the ICSCI at Kennedy Krieger Institute has been chosen as one of the charity teams. The ICSCI team has registered over 230 participants, including employees, friends, family members, and even some of our own patients.

“These folks are enthusiastic,” says ICSCI team coach Tom Saulsbery. Saulsbery, an ICSCI patient himself, has been training athletes for 15 years. Once people knew he’d done many of these events himself as a former competitive athlete, they began asking him for advice, so it was a natural transition into coaching. Each month he holds a structured seminar that includes training tips such as maintaining proper nutrition, hydration, and energy; dealing with injuries; and tailoring training schedules.

Much of the ICSCI team is comprised of therapists, and Saulsbery notes that “in therapy, the therapists are always encouraging [patients] to do this and that. This is different—now I’m encouraging them.”

While recreational activities for individuals with disabilities are often overlooked, ICSCI understands the important benefits of exercise for our patients, including improved health, self-esteem, social connections, and community reintegration. With this team, ICSCI is aiming to increase the number of patients who are able to participate in races each year, open the door to improved physical fitness for those with disabilities, and fund research toward a cure for paralysis. As Saulsbery notes, this is about more than just the race: it’s about encouraging people to embrace a healthy lifestyle by eating healthy and exercising. Saulsbery explains that the race “is simply a vehicle to get you on track…it’s about growth, not how far or fast you [go].”

Patient Spotlight:

ICSCI is excited that several of our own patients will be participating in this year’s race. We’d like to highlight a few of these patients as they train for the upcoming festival.

Marshall Garber: A 17-year-old from Cleveland, Ohio, Marshall was suddenly paralyzed from the waist down after developing a fibrous mass on his spinal cord. Emergency surgery saved his life, but left him without the use of his legs.

His family began making regular trips to Baltimore two years ago to pursue advanced rehabilitation at Kennedy Krieger. “Each time Marshall returns, he has something new to share with me,” says his physical therapist Erin Michael, PT, DPT, ATP. “Whether it’s wiggling a toe, lifting his leg, the fact that he can feel the difference between hot and cold, or that he can now tell what something is when he sits on it.” Marshall currently walks with KAFOs but hopes to one day be able to eliminate the need for bracing. He has been training for the Running Festival since May, and this October, Marshall will be using a hand cycle to complete the full marathon. When his therapists first encouraged him to start training, he viewed it as a way to stay active postinjury. “I knew that if he set his mind to cycling the full marathon, he would accomplish it,” says Michael. Now, Marshall says, it has developed into a passion—a need for speed. He’s hoping for a 20-22 MPH pace on race day. Marshall has his sights set on qualifying for the 2016 Paralympics, with Baltimore’s event as his first challenge.

Michael explains that “Marshall’s excitement about the race is contagious. He is so proud of himself. His face lights up when he talks about cycling, and he has told me on more than one occasion that this is the most fun he has had since his injury, possibly in his whole life.” continued on page 8

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Baltimore Running Festival

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John Manison: Two years ago John felt a sudden, severe pain in his legs. By the time he reached the emergency room, he was paralyzed from the waist down. The diagnosis: transverse myelitis—a neurological disorder that occurs when the immune system abnormally attacks the spinal cord. Today, this 18-year-old from Pennsylvania is dedicated to rehabilitation and living life without a wheelchair. In the two years since John has been coming to Kennedy Krieger, his physical therapist has seen dramatic progress. “Initially when I met John, he primarily used his wheelchair to get around at home and in school,” says Sara Shippen, PT, DPT. “Now John walks everywhere he goes and has participated in both the baseball and swim teams in high school.” His progress enabled John to go to his high school prom and dance with his date, and to walk across the stage and receive his high school diploma this year.

Since coming to Kennedy Krieger, John has become an ICSCI celebrity. “John like[s] to dress up for therapy. [I was told] it was kind of like summer camp, and he likes to make it fun,” Shippen explains. John’s unwavering optimism and eccentric outfits give him the unique ability to light up the gym every time he comes back to Kennedy Krieger. “My favorite thing about John is his ability to make others smile,” Shippen shares. Patients often ask her, “When is John coming back?” and “What are you guys going to dress up like next time?” When John is in town, parents of other patients often join in the fun and find themselves frantically trying to piece together costumes for the next day’s therapy session.

From the moment he saw the flyer for the Baltimore Running Festival in the ICSCI gym and learned about the team, John, without hesitation, said he wanted to run alongside Shippen in the half marathon. Although Shippen is cautious about his participation because he still has some muscle weakness globally, particularly in his feet, and she knows that the marathon will test his

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physical and mental limits, John has experienced amazing progress. During his last bout of therapy at Kennedy Krieger, John was able to use specialized equipment such as the Therastride and the Hydro Track, which allowed him to try running for the first time since the onset of his transverse myelitis. “John used to participate in track and field prior to his injury, and I could see the spark ignite instantly in his eyes and the smile grow from ear to ear as he watched himself in the mirrors start to run for the first time in a long time,” says Shippen. With body weight support that day, he was able to run four miles on the treadmill. In October, his dramatic progress will be powerfully illustrated when he attempts to run/walk the 13-mile half marathon using leg braces and canes.

Shippen explains, “He is an inspiration to other patients, to therapists, and to me.”

Jerry Sersen: For this 58-year-old native Baltimorean, the simple act of walking has been in jeopardy for much of his life. At age six, he first began to struggle with walking. Doctors never diagnosed him, but predicted he would be in a wheelchair before he was a teenager. Jerry defied the prediction, but struggled throughout his life to stay on his feet. It was at the age of 50 that it seemed like fate was going to take its course, and he prepared to sell his condo on the water when climbing even a few steps had become too difficult. He began therapy at Kennedy Krieger to stave off what seemed inevitable. The results were dramatic, and Jerry recently walked a mile for the first time in 10 years—the motivation that he needed to set his sights on training to walk the 5K at this year’s running festival, a feat that once seemed impossible. His physical therapist, Nia Wallace, PT, DPT, raves about his progress: “He has developed a confidence in himself and his abilities. He has a strong drive, and although his humility won’t allow him to admit it, he provides a silent inspiration to those around him who see how focused he is.” His focus on working toward walking a two-mile free walk at his local park and being one of the top fundraisers on the

ICSCI team is impressive. “[I can] take a lesson from him and let actions speak louder than words,” says Wallace.

“I am honored to say that I will be walking alongside Jerry on the morning of October 13th and I can’t wait for us to make it across that finish line together…as a team.”

Christopher Utz A year and a half ago, Chris was involved in a motor vehicle accident and his truck rolled over four times.

The 26-year-old came to Kennedy Krieger Institute based on a recommendation by a friend who is also injured.

Although his initial bout of therapy was cut short due to surgery, since coming to ICSCI he has more movement back and more trunk stability, and he wants to return to therapy once he’s fully healed. According to his physical therapist, Charissa Steinbacher, PT, DPT, MPH, while in therapy Chris shows a unique focus and determination.

“While working on challenging activities during PT, he would often close his eyes. The first time he did this, I thought he was falling asleep, but then I realized this was his way of focusing!” Although he’s never been in a marathon before, prior to his accident he used to race Jet Skis. While undergoing therapy at ICSCI, he mentioned

to Charissa that he was interested in trying the hand cycle and getting involved with the Baltimore Adapted Recreation and Sports (BARS) program. So when the ICSCI decided to form a Baltimore Running Festival team, Steinbacher knew that Chris would be interested, and she was right. He’ll be arm cycling in the marathon and has been training for three months. “I am so excited and proud of all of his hard work!” says Steinbacher.

“The hard work and dedication of Chris and our other participants are helping to make Kennedy Krieger’s inaugural participation in the Baltimore Running Festival a huge success.” Chris says that it’s tough to keep himself motivated when training, but his goal is to finish the course in 3 ½ hours. Although Chris has set a time goal for himself, he says, “I know that when I get there I’m not racing anyone else but myself.”

Program Spotlight: VSail Access Program At the highest competitive levels, Olympic sailors are known to use the VSail to improve strength, endurance, and sailing skill. By integrating the VSail Access Program with physical and occupational regimens, the program seeks to maximize the therapeutic benefits of VSail for individuals with spinal cord injury. The Virtual Sailing program “recognizes that recreational therapy during the rehabilitation period is important for general well-being, physical fitness, and reintegration into the community of people with disabilities,” says Recio. So far, more than 80 patients have used the sailing simulator, and quite a few have ventured out onto the water. This September, several more patients transitioned from the VSail to onthe-water sailing.

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To ensure that VSail program participants are learning all essential sailing techniques before ultimately transitioning to outdoor sailing, the ICSCI is working alongside Baltimore’s Downtown Sailing Center (DSC) in our VSail Access program. The DSC owns several different models of accessible sailboats and employs a dedicated staff of sailors who are experienced in all aspects of accessible sailing. On October 22, 2012, the DSC will be hosting its annual Ya Gotta Regatta, and several ICSCI patients and staff will be participating and promoting the importance of accessible sailing.

“We’re excited about the Virtual Sailing Program,” says Recio. “We hope it will continue to grow as more individuals with spinal cord injury learn the joys of sailing.”

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Employee Profiles There are numerous unsung ICSCI heroes who have dedicated themselves to clinical care and research. They motivate and inspire those around them, and their enthusiasm and passion are remarkable. We are fortunate to have so many exemplary employees, and for that reason, in each newsletter we would like to highlight a few of their stories.

Clinical Employee Profile: Amy Boettinger, PT, DPT Physical Therapist According to the American Physical Therapy Association, physical therapists help patients reduce pain and improve or restore mobility by teaching them how to prevent or manage their condition so they will achieve long-term benefits. But at the ICSCI, our physical therapists do so much more—and Amy Boettinger has been a shining example of that fact. Joining us a little over a year ago, this Baltimore native has already made an impact on the team. Amy is “always willing to go the extra mile and motivate patients to do more than they thought they could!” says a fellow employee.

Amy graduated from Towson University with a bachelor of science degree in Exercise Science in 2008 and earned her Doctorate of Physical Therapy in 2011 from George Washington University. While ICSCI is her first job as a physical therapist, she had a variety of clinical experiences prior to coming to Kennedy Krieger.

In physical therapy, sometimes it’s about more than helping patients overcome physical limitations; it’s about inspiring one another to achieve more. Amy will tell you that there are certainly amazing moments, like knowing that she’s helped an ICSCI patient achieve greater functional mobility, which not only delayed the need for total knee replacement surgery, but also allowed the patient to walk over a mile and half for the first time in 10 years.

“The best part of working at ICSCI is the very supportive team environment with a tremendous opportunity to learn.

Our staff has a diverse background and a variety of skills that allow our patients to have the best care, as well as helping me continue to learn as a healthcare professional,” says Amy. Describing her as “an all-around great therapist,” her fellow employees see that Amy has helped the team, as well. As another employee explains, Amy “goes above and beyond to communicate with the team to provide the best care for patients.”

“I have had the pleasure of having multiple experiences and moments at ICSCI that allow me to look forward to coming into work each day,” Amy explains. Although she knows that it’s not all about her, it helps to know that a patient she has helped to treat walked down the aisle at her wedding this summer, surprising her friends and family with the tremendous progress she’s made since her initial injury seven years ago.

“If there are any rough days, just stepping into the gym or in the pool areas can illustrate what our patients have worked so hard to achieve,” says Amy. “My goal is to make a difference each day, no matter how big or small.”

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Research Employee Profile: James Pendleton MD, PhD Candidate Graduate Student James Pendleton has a unique understanding of the delicate balance between the technical and safety limitations of research, and the pressing concerns about how to translate research into tangible benefits for our patients. As a graduate student in the dual MD/PhD program at Johns Hopkins University, when it came time to look for a research laboratory to work with, James eagerly joined the ICSCI program as a trainee three years ago. “Kennedy Krieger has a reputation, even within the larger Hopkins community, for being a highly interactive community and a tremendous place to study. I was sold when Dr. McDonald gave a talk to my graduate program in which he underlined that all the things I was looking for were a part of the ICSCI and the Kennedy Krieger culture,” says James. He will tell you that despite the huge prevalence of SCI, it does not receive the attention from the medical and research community that it should, and that given our understanding of injury progression and therapeutics, the SCI field has great potential.

A born and raised West Coaster, James is originally from a central valley California town called Visalia. Upon being accepted to Morehouse College in Georgia, James moved to Georgia and received his bachelor of science degree in Biology in 2005. He soon aspired to become a doctor and study neurology, which brought him to Johns Hopkins University.

Although some people may imagine that research is a solitary effort, it requires an entire team of people all working together to drive research in the right direction and achieve breakthroughs that no one else thought were possible.

“Professionally, the knowledge and training that I have been afforded from Dr. McDonald and the research team, as well as the clinicians I’ve been fortunate enough to encounter, have been invaluable,” James explains. However, he admits that on some levels it is disappointing to know that many of the combined molecular treatments, molecular/ genetic therapeutics, and cell-based therapies being tested in labs all around the world are still many years away from being widely available to patients.

Over the past three years, James has been actively working on several promising research projects, including the investigation of how the cascade of molecules inhibitory to regeneration (particularly CSPGs or chondroitin sulfate proteoglycans) that are released following SCI create an environment that is restrictive to regeneration. His other projects focus on the secondary phase of SCI (the primary phase being characterized by cell death immediately resulting from physical trauma), where oligodendrocyte cell death leads to expansion of the lesion caused by the injury and functional deficits. One day, he hopes to practice as an orthopedic surgeon in an academic setting, where he can also continue to conduct scientific research in regenerative medicine and tissue engineering.

ICSCI has always strongly encouraged our scientists and patients to meet and understand the shared common goals of recovery, and his co-workers agree that James has excelled in that role. He is always willing to volunteer to step in for a lab tour when other researchers are unavailable, says an employee, and his enthusiasm during bi-weekly ICSCI patient Q&As is evident. “The patients and families I’ve interacted with have been nothing short of amazing,” explains James.

“They have educated me about many of the practical issues they face in dealing with SCI and have reinforced a sense of purpose in my research.”

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We took a leap of faith to come here [to Kennedy Krieger].

[Noa was 16 months old] but the therapists never said she was too small, they just came up with ideas. — Jordana Carmel, mother of patient

Research: Clinical Trials The International Center for Spinal Cord Injury is excited to have six active clinical trials being conducted by our team of researchers. Several are still recruiting participants, including:

Approved September 30, 2010

NA_00041441 - FIRST-STIM Volunteers with transverse myelitis, multiple sclerosis, or NMO needed.

CNS Growth Factor Release and Changes in the Inflammatory Environment in Response to Electrical Stimulation in Subjects with Inflammatory Myelopathies.

Principal Investigator: Daniel Becker, MD NA_00001271 - Relationship of MRI to ASIA Impairment Scale in Chronic Spinal Cord Injury Adults with paralysis due to cervical spinal cord disease (trauma, tumors, infections, stroke, etc.) needed.

This research is being done because we are working on developing new ways to use Magnetic Resonance Imaging (MRI), Transcranial Magnetic Stimulation (TMS), Peripheral Nerve Stimulation (PNS), and Electromyographic responses (EMG) to tell us about spinal cord and nerve function.

Principal Investigator: John McDonald, MD, PhD NA_00014481 - Patterned FES Ergometry of Arm and Shoulder in Individuals with Spinal Cord Injury Adults with paralysis due to spinal cord disease (trauma, tumors, infections, stroke, etc.) needed for study.

This research is being done to find out if Functional Electrical Stimulation (FES) arm cycling can improve the function of people with cervical spinal cord injury. Recruitment benefit after completion is $250.

Principal Investigator: Cristina Sadowsky, MD NA_00044093 - Virtual Sailing Simulator in Individuals with Spinal Cord Injury Adult volunteers with spinal cord injury needed.

The research is being done to look at the benefits of a recreational and therapeutic program for people with spinal cord injury using the VSail-Access sailing simulator.

Principal Investigator: Albert Recio, MD

Exercise and Spinal Cord Injury: Why Exercise?

Physical activity is important for everyone. According to the President’s Council on Physical Fitness and Sports, people with disabilities are less likely to engage in regular moderate physical activity than people without disabilities, yet they have similar needs: to promote their health and prevent unnecessary disease. Exercise reduces the risk of developing chronic health problems such as heart disease, high blood pressure, and diabetes. For people with SCI, remaining physically active can lower the risk of developing secondary complications such as urinary tract infections, pressure sores, and respiratory illness.

Physical activity can also help SCI individuals better manage problems such as spasticity and weight gain.

It can help improve strength and endurance, which can in turn improve the ability to accomplish everyday tasks such as transferring to and from a wheelchair and pushing a manual wheelchair. In addition, research has shown that people who are physically active are less likely to experience feelings of anxiety, loneliness, and depression.

Although a spinal cord injury can make physical activity and exercise much harder, it certainly does not make them impossible. Before starting or changing an exercise program of any kind, it is important to first seek professional advice. Talk to your doctor and physical therapist to make sure that proposed exercises are safe.

Tips for Success From the Spinal Cord Injury Network booklet: Exercise and Spinal Cord Injury, 2011 via the Miami Project themiamiproject.org

If you need additional information about a specific clinical research project, or if you think you may be eligible, please call the ICSCI Clinical Research Coordinator at 443-923-9235 or email clinicaltrials@spinalcordrecovery.org. Please be prepared to leave a detailed message, including the protocol number of the clinical research you are interested in and your contact information, so that we may respond with a confidential message for you. You may also visit our website: spinalcordrecovery.org.

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From Christopher and Dana Reeve Foundation: christopherreeve.org

1. Physical activity and exercise is for EVERYONE, even if you have a spinal cord injury.

2. It is important to talk to your doctor or therapist BEFORE starting or changing your exercise program.

3. HAVE FUN and recognize that you have made a significant step towards a healthier you.

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spinalcordrecovery.org

Upcoming ICSCI Events

Recent ICSCI Research and Professional Publications

Patient Q&A Sessions: Friday, October 5 Friday, November 2 Friday, November 16 Friday, November 30 Friday, December 14

Electrical Stimulation Rebecca Martin, Kimberly Obst, Brooke Meyer, Cristina Sadowsky, and John McDonald saw their article entitled “Functional Electrical Stimulation in Spinal Cord Injury: From Theory to Practice” published in a recent edition of Topics in Spinal Cord Injury Rehabilitation magazine. 2012; 18(1):28-33.

Sign Up to Learn More

Please contact Anna Schneider (schneiderA@kennedykrieger.org) or your therapist for more information or to RSVP for an upcoming Q&A session.

Regeneration Generation Support Group Monday, September 24 Monday, October 22 Monday, November 26

To sign up for the e-version of the newsletter or updates, please email ICSCInews@kennedykrieger.org or call 443-923-9239.

Support Our Work With your support we are revolutioniz­ing rehabilitation for patients with spinal cord injury and paralysis, offering something many of them have been told was lost forever: hope.

Please contact Kaitlin MacDonald (MacDonaldK@kennedykrieger.org) for more information or to RSVP for an upcoming meeting.

Baltimore Running Festival – October 13, 2012, 7:00 a.m. at the M&T Bank (Ravens) Stadium Kennedy Krieger Institute has an official charity team, and the proceeds will benefit ICSCI programs. For more information about the race participants, please go to kennedykrieger.org/ BaltimoreMarathon/

Working 2 Walk November 1-3, 2012 in Irvine, California The ICSCI at Kennedy Krieger Institute is an official sponsor of the 2012 Working 2 Walk Science and Advocacy Symposium. More information for Working 2 Walk can be found at unite2fightparalysis.org/

potential

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Devin Gary, Misti Malone, Paul Capestany, Thierry Houdayer, and John McDonald published an article entitled “Electrical field stimulation promotes the survival of MBP+ Oligodendrocytes in mixed cortical cultures” in the Journal of Neuroscience Research. 2012; 90(1):72-83.

Devin Gary, Misti Malone, Thierry Houdayer, Visar Belegu, John McDonald et al. published an article entitled “Axon myelination and electrical stimulation in microfluidic, compartmentalized cell culture platform” in Neuromolecular Medicine. 2012; 14(2):112-18.

Mobility Erin Michael recently published an article entitled “Empowered Mobility” in the journal Rehab Management. January/February 2012 issue.

Nerve Degeneration and Regeneration Baohan Pan, John McDonald, Larry Schramm et al. published an article entitled “The lateral thoracic nerve and the cutaneous maximus muscle – a novel in vivo model system for nerve degeneration and regeneration studies” in Experimental Neurology. 2012; 236(1):6-18.

or visit us at helpkids.kennedykrieger.org

Learn More. Get Involved. Stay Connected.

Receive News, Updates, & Alerts Learn about news, advancements, inspiring stories, great events, and more through our publications, e-mail updates, SMS alerts, and online communities. kennedykrieger.org/subscribe

Rebecca Martin, Kristin Johnston, and Cristina Sadowsky’s article was published in the American Journal of Occupational Therapy. The article is entitled “Brief Report: Neuromuscular Electrical Stimulation – Assisted Grasp Training and Restoration of Function in the Tetraplegic Hand: A Case Series”. 2012; 66(4):471-7.

Volunteering & Events Whether you’re donating your time and talents or attending an Institute event, your support is the key to unlocking the potential of a child with special needs. kennedykrieger.org/engage

Join Us Online Visit our online communities to follow, watch, read, listen, and join the conversation. kennedykrieger.org/connect

The occupational and physical therapists share a common disposition about possibilities. They are uplifting in every way; in terms of encouragement, therapy, and then literally they get you up on your feet. In my first therapy session the therapist asked “How about we try standing today?”

— Jerry Sersen, patient

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