International Center for Spinal Cord Injury Updates - Winter 2013

Spinal Cord Injury

Updates

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

WINTER 2013 • Vol. 4, Issue 1

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A Word from the Director Here at the International Center for Spinal Cord Injury (ICSCI) at Kennedy Krieger, we pride ourselves on offering the best available care, informed by highly advanced research. But it is not enough to stay abreast of the most recent discoveries and treatment advancements—we must also strive to be the ones making them.

It is a mission we are dedicated to, one in which we have proven success. The dynamic research program at ICSCI addresses questions and problems that span the extent of spinal cord injury, and our ongoing programs include both clinical and basic science research. With research initiatives ranging from cell-based therapies to functional electrical stimulation therapy and advanced imaging techniques, our investigators are committed to finding better treatments, and ultimately, hope for individuals with spinal cord injury and paralysis.

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

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A Special Day for Diego

INSIDE THIS ISSUE A Word from the Director A Special Day for Diego Perneita Farrar’s Story Spotlight on Research Running Festival Follow-Up Employee Profiles Upcoming Events Recent Publications In the News Dear John Program Spotlight

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By Robin Locks, Customer Relations Management Project Coordinator Last November, we had the opportunity to make a dream come true for 12-year-old Diego Mendoza. The idea began with a conversation that Patrick Rummerfield, ICSCI’s community relations liaison, had with Diego several months ago while visiting him during an inpatient therapy session. Diego told Patrick that he loved Corvettes and wished that he could go for a ride in one. That was all Patrick, a fellow car lover, needed to hear. In the next breath he said, “Sure, we can do that.” Later, Patrick shared his idea with me and asked for my help in making Diego’s dream possible. 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.

A Word from the Director

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Our researchers are hard at work, and over the last few months our team has presented new findings in chondroitin sulfate proteoglycans (CSPGs), organogenesis, and electrical stimulation.

New Research Updates: Chondroitin sulfate proteoglycans (CSPGs) It has been well established that following a central nervous system injury, there is increased production of chondroitin sulfate proteoglycans (CSPGs), which causes inhibition of axonal regeneration. Recently, our researchers have discovered that CSPGs also inhibit oligodendrocytes’ outgrowth and thusly, myelination/remyelination, and that this inhibition is mediated through protein tyrosine phosphatase sigma (PTPσ). We believe that PTPσ can be utilized as a potential target to mitigate that damage.

Organogenesis Organogenesis (or organ formation) is a promising area of research, and our center’s scientists are investigating whether stem cells are capable of self-organizing into spinal cord–like tissues, as well as the mechanisms that govern neural organogenesis for the generation of transplantable tissues, which are critical for central nervous system repair. Our initial data demonstrates that stem cells do have the potential to differentiate and self-organize into neural tissues after transplantation into a host, and that embryonic stem (ES) cell–derived neural progenitors injected into the intrathecal space will organize into tissue that is anatomically similar to normal spinal cord. Additionally, we have demonstrated that during that process, neuronal connections are established between the host spinal cord and ES cell grafts.

Electrical Stimulation and Myelination In our clinical practice, functional electrical stimulation is an integral part of our Activity-Based Restorative Therapy (ABRT) program. In the research laboratory, our basic science research team also uses electrical stimulation to increase neuronal activity, and it is well established that neuronal activity promotes myelination both in vivo and in vitro. In a recent series of experiments, our own ICSCI lab researchers have demonstrated that myelination is dependent on electrical stimulation frequency, and that cyclic AMP (cAMP) levels play an important role in the myelination process.

Electrical Stimulation and Cycling In a recent retrospective cohort study of 25 persons with chronic spinal cord injury (SCI) who received functional electrical stimulation (FES) during cycling, we examined the effect of long-term lower extremity FES cycling on the physical integrity and functional recovery in people with chronic SCI. We found that FES may provide substantial physical integrity benefits, including enhanced neurological and functional performance, increased muscle size and force-generation potential, reduced spasticity, and improved quality of life.

These results are exciting discoveries, and we look forward to building upon them and sharing those results with you. Your support has made it possible for us to continue innovating new approaches to research, rehabilitation, and treatment of spinal cord injury. Thank you for embracing our philosophy of hope and revolutionizing the way people think about spinal cord injury.

Cheers,

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

For more information about our research, visit spinalcordrecovery.org. {2}

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A Special Day for Diego

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I proceeded along the road of “hope,” and placed a call to Fox Chevrolet in Timonium, Maryland. I explained to Phillip Burns, the general manager, that riding in a Corvette was young Diego’s dream, and that we were looking for a way to fulfill it. Fortunately Mr. Burns loved the idea. He said he could hardly wait and was looking forward to being a part of this special day. From that moment I knew this would be a great experience. It was obvious, even over the phone, that Mr. Burns was filled with a willing spirit to help one of our kids. His depth of caring for others made my request and our conversation easy. He loves children and has a big heart. To my grateful surprise, he enlisted his entire staff to help create a fun and special day for our child.

Diego’s mother, Patricia, kept the secret for a long time. She knew what we were planning, and waited until we had everything confirmed and in place before telling Diego. During the months of planning, Diego transitioned from our inpatient ICSCI program to our outpatient rehabilitative therapy program, and he and his mother continued to shine the light of hope through motion.

Finally, one afternoon in November, Kennedy Krieger staff Patrick Rummerfield, Dr. John McDonald, our photographer, Anthony Scimonelli, and I assembled at Fox Chevrolet along with Diego and his mother. The weather was not optimal, but we only saw sunshine and smiles. One of the salesmen drove a candy apple red Corvette close to the entrance and asked us for Diego’s favorite radio station so that he could tune it in for Diego’s ride. Diego was a VIP, and everyone treated him like the most important customer of the day. Every one of the employees at the dealership happily participated in the execution of Diego’s dream and showered him with a host of Corvette memorabilia. It was a humbling experience to see people so willing to do something special for a child. As Patrick Rummerfield and Diego, handsomely dressed in Corvette regalia, drove off the car lot, everyone was smiling.

The aftereffect lingers on, and one day in the spring of 2013 we plan to visit again!

It takes a village of willing and conscientious people to make great things happen. Many thanks to the ICSCI clinical team that helped make this day possible!

From left to right: Phillip Burns, Fox Chevrolet General Manager; Diego Mendoza; Patrick Rummerfield, ICSCI Community Relations Liaison; and Dr. John McDonald, ICSCI Executive Director.

Perneita Farrar In 1999, Perneita Farrar, then 26, was diagnosed with lupus, a chronic inflammatory disease that causes the immune system to attack the body. Five years later, lupus had attacked Farrar’s spinal cord, and she experienced increasing weakness, global fatigue, and rapid weight loss. By 2007, she experienced gradual paralysis and was diagnosed with transverse myelitis, which left her in a wheelchair. Farrar spent two years being shuttled between three nursing homes and five hospitals. “I don’t think anybody had any hope for me at that point,” she recalls. “This dragged out for 848 days. Life moved on for everybody but me.”

Part of Perneita Farrar’s story was featured in the December 2012 Essence Magazine.

But something changed when she began outpatient therapy at Kennedy Krieger’s International Center for Spinal Cord Injury (ICSCI) in June 2010. The innovative and aggressive nature of treatment augmented her flexibility and movement, and she began to see improvement. Within a few months she was able to achieve stationary standing with minimal assistance, and she could ambulate using a rolling walker for 50 to 60 feet without a break.

In September of 2011, during a follow-up appointment with her physician, Dr. Albert Recio, Farrar shared a special announcement and wanted to discuss her newest goal: She was engaged to be married, and she wanted to walk down the aisle in August 2012. Almost immediately, Dr. Recio and Farrar’s therapy team updated her functional goals in order to optimize her recovery and make her dream come true. Inspired by Farrar, Dr. Recio had an idea. He wanted to somehow get in touch with a wedding dress designer and help Perneita find the dress of her dreams. With the help of ICSCI community relations liaison Patrick Rummerfield, they were able to get in touch with Justin Alexander, who generously agreed to donate a dress to Perneita for her wedding. By February of 2011, she was in New York City meeting Justin Alexander and trying on the dress of her dreams.

Only six months later, on August 4, 2012, Farrar stood in the open doors of the University of Maryland wedding chapel, surrounded by 15 pounds of ruffled organza, sequins, and faux pearls. With her father on her right side and her 22-year-old son on her left, she walked precisely 97 feet to meet her groom. The sight of her walking, which she had kept secret from her friends, family, and even her fiancé, was an emotional moment. Almost exactly one year after she shared her radical goal with her physician, her progress was astounding. Julie Cagney, PT, DPT, Farrar’s physical therapist, shares, “It was probably one of the top five moments of my life, seeing how beautiful and confident she looked as she strutted her stuff alongside her dad and son! The entire church erupted into tears and cheers. It was incredible!”

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Spotlight on Research 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.

An Introduction to the New Epigenetics Research Program

By Visar Belegu, PhD Spinal cord injury (SCI) is a devastating condition that imposes major costs on individuals and society. Close to 12,000 traumatic injuries occur each year in the United States, and 1.275 million people live with spinal cord injury. Including non-traumatic spinal cord lesions, such as those associated with multiple sclerosis, quadruples the number of cases of paralysis in the United States. Unfortunately, when an individual suffers a spinal cord injury, it is almost impossible to predict their regenerative potential.

Patients with the same level and type of injury do not experience the same type of functional, motor, and sensory deficits. Aside from external and internal factors of motivation, personality, family support, and environment, patients with similar injuries may not have identical recoveries. We believe that epigenetics may provide answers as to what determines the regenerative potential of the central nervous system.

Since Watson and Crick’s groundbreaking discovery of the double helix DNA structure, there’s been an emergent assumption that DNA is what makes us what we are. This is too simple an explanation. Most of us have heard that we share 70 percent of our DNA with a banana and 99 percent with a chimpanzee. Yet there are obvious differences between us, the chimp, and the banana. When it comes to our genes, it is less about what the genes are, but rather when and how they are processed and how their expression is regulated. In biology, epigenetics is the study of heritable changes in gene expression and observable cellular traits. Epigenetics fills in the gaps that knowledge of the genome left. For example, almost all of a person’s cells contain the same DNA, yet some of these cells are skin, some are hair, and some are organs. Genetically, these cells are all the same, yet they behave differently because they utilize those genes differently.

The new epigenetics research program will focus on identifying the epigenetic changes affiliated with neurological recovery in chronic spinal cord injury. Because it is believed that injury causes epigenetic changes on the cellular level and that some of these epigenetic modifications may present an additional barrier to recovery, identification of epigenetic changes that are associated with injury and subsequent recovery is essential. Technological advances in DNA sequencing enable genome-wide epigenetic mapping associated with various biological processes.

By using these mapping techniques to identify therapeutic targets and to monitor the effectiveness of ABRT (Activity-Based Restorative Therapy) for the treatment of SCI, we aim to determine if ABRT-associated recovery involves epigenetic changes. Epigenetic mapping will improve diagnosis of the severity of SCI and potentially provide a fingerprint or biomarker of an individual’s regenerative status.

This research will provide new information on an individual’s response to injury at the cellular level, providing the medical and research community with new targets for therapy. SCI affects every afflicted individual differently; therefore, it requires a personalized therapeutic intervention. The goal of the new research program is to extend that personalization to the therapeutic interventions we provide, so that every person with SCI can achieve complete functional recovery.

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

Running Festival Follow-Up Story In late 2011, Erin Michael, PT, DPT, ATP/SMS, shared a vision with the International Center for Spinal Cord Injury (ICSCI) team: She wanted Kennedy Krieger Institute and ICSCI to have its own charity team in the annual Baltimore Running Festival.

She wanted to not only raise money, but also encourage patients to participate and raise awareness about wellness and activity for those with paralysis. On Saturday, October 13, 2012, dreams became a reality. What had started as the vision of one therapist became a two-day event and is now a new Kennedy Krieger and ICSCI tradition. As Erin explains, “I would never have imagined what that day would be like. It was by far the best day of my life, to see what the patients accomplished, to see our own staff push their limits to help our patients. It was the perfect picture of how much our Institute cares and wants to help patients accomplish their goals.”

The two-day event began with a pasta party Friday evening.

What had been planned as a carb-loading social event to celebrate the upcoming races became inspirational. After everyone had filled their bellies with delicious Sabatino’s pasta and salads, which were generously donated by the Little Italy restaurant, the party wound down, but the joy had just begun. Partygoers were introduced to the patients who would be participating in the races, and as each patient came to the front of the room and the audience heard a bit of their story, there was a renewed sense of why everyone was there.

Chris Utz loads up on carbs at the pasta party.

Marshall Garber and his therapy team.

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Early Saturday morning, dressed in bright yellow Kennedy Krieger team shirts and still invigorated from the night before, the race day’s chilly weather couldn’t dampen the spirits of the more than 250 people who came to race or volunteer at the team tent and water stop.

As each race began, all eyes were on the seven ICSCI racers who made history as the first group of patients to Phil Culotta of Sabatino’s participate in the Kennedy and Erin Michael.

Krieger Baltimore Running Festival team: Marshall Garber of Greenwich, OH; John Manison of North East, PA; Chris Utz of Pasadena, MD; Jerry Sersen of Joppatowne, MD; Joe Kelly of Forest Hill, MD; Alex Curtis of Gainesville, VA; and Sarah Alexander of Hattiesburg, MS. Excitement spilled over to the ICSCI/Kennedy Krieger water stop volunteers. When each of the patients approached the stop, there were even more tears and cheers. And as they crossed the finish line, the joy could no longer be contained, and the party continued in the Kennedy Krieger team tent. First to cross were the full marathon hand cyclers, Marshall Garber, who nabbed second place in the hand-cycling division and third overall, and Chris Utz. Next were the 5K racers: Jerry Sersen, Joe Kelly, Alex Curtis, and Sarah Alexander. John Manison ran in the final race, the half-marathon.

By day’s end, the team had raised over $92,000. Portions of the funds raised were used to purchase three Top End hand cycles—the Force 2, Force RX, and XLT—that will be used by patients in future races, and the Bioness L300 Plus system, an FES thigh cuff for gait training.

Additional funds will be used to help kick-start the 2013 Baltimore Running Festival team

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And why should people who sat out last year participate this year?

Erin responds simply, “Why shouldn’t they?” She explains, “For staff, family members, and friends of the Institute, by running or volunteering you get to see patients shine, show support for all of their hard work, and raise money for our patients’ success in future events.” But Erin has a special reason for wanting patients to participate. “For patients it’s a chance to get active, and it gives them a goal to work towards with the support of the staff and other patients. It gives them the opportunity to do something they might have been told that they could never do.”

The adapted racers wait anxiously to start their 26.2 mile journey.

effort, create a new Racing Scholarship Program to support the training needs of patients who show an interest and dedication to racing, and support additional ICSCI and Kennedy Krieger programs. Erin is ecstatic that the team surpassed her wildest dreams, and she’s already looking towards the 2013 race. She wants to triple the number of patients who participate.

Alex Curtis jogs towards the 5K finish line.

Sarah Alexander holds a custom-designed poster, signed by the ICSCI team, commemorating the event.

Joe Kelly and his wife are ecstatic and overwhelmed as he approaches the finish line.

Jerry Sersen drops his walking sticks to cross the finish line, as his physical therapist, Nia Walbee, cheers him on.

Sign up now for Kennedy Krieger Institute’s Baltimore Running Festival Charity Team!

Saturday, October 12, 2013 • M&T Bank Stadium kennedykrieger.org/BaltimoreMarathon By registering for the Kennedy Krieger Charity Team, you are agreeing to raise $250 to support our spinal cord injury program and the training needs of patients with disabilities who participate in the event ($50 if you are participating in the Kid’s Fun Run).

New this year: Snore for Kennedy Krieger! Can’t make it to the race, but still want to support Kennedy Krieger Institute? By registering to Snore, you are agreeing to raise $100 for Kennedy Krieger Institute. Please see our team website for more information.

Sign up now and receive: • Free registration.

• A free catered carb-loading pasta party the evening before the race.

• A Kennedy Krieger Institute Under Armour team shirt.

• A participant goody bag with all kinds of cool stuff.

• Access to the team tent to secure your belongings during the race.

• Morning coffee and breakfast, and post-race snacks and refreshments.

Registration is open to everyone!

For more information or to register online, visit kennedykrieger.org/BaltimoreMarathon.

Questions? Contact us at events@kennedykrieger.org or 443-923-7300.

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Employee Profile 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 one of their stories.

Clinical Employee Profile: Erin Michael, PT, DPT, ATP/SMS Physical Therapist Seating and Mobility Specialist, and Clinic Equipment Coordinator Growing up in upstate New York, Erin Michael imagined that she would become a kindergarten teacher, but fate had other plans. In the 10th grade, Erin volunteered at a skilled nursing facility, and one day she was assigned to the physical therapy department.

This experience sparked a new passion, and she quickly became interested in physical therapy as her future career.

As the visionary behind Kennedy Krieger’s first Baltimore Running Festival team last year, Erin is known by most people to be especially passionate about sports and wellness. But few would guess just how passionate. At age three she started doing soccer clinics, and in junior high she began playing lacrosse to keep in shape during the off season for soccer. While in college at Ithaca, she helped found the school’s soccer club team. In her free time, Erin still plays soccer, and even touch football, in addition to running and crossfit. Her active lifestyle is probably one of the reasons that a recent Health Risk Assessment survey determined that Erin’s “true health age” is a mere 16 years old!

After graduating from Ithaca with her bachelor’s degree in clinical science, she went on to earn master’s and doctoral degrees in physical therapy, and worked for two years at a general rehab facility in the Boston area. During those two years, she worked with several spinal cord injury patients and was a part of the facility’s spinal cord injury rehab program development team. She quickly learned that she was interested in focusing on spinal cord injury rehabilitation. An Ithaca classmate remembered that another alumnus was working in spinal cord injury at ICSCI, so she recommended that Erin look into the program.

Since relocating from Boston to Baltimore in September 2008 and joining ICSCI, in addition to being a physical therapist, Erin has taken on several leadership roles as a seating and mobility specialist for the ICSCI seating clinic program and the clinic equipment coordinator.

Recently, she spearheaded the inaugural Kennedy Krieger Baltimore Running Festival Charity Team, and even her co-workers are impressed. According to one, “Erin is recognized for her ability to assist patients in defining real, motivating goals that push them even further past their comfort zones, and encourage them to be part of such a huge event in Baltimore.”

But it’s easy to see that over the last four and a half years, Erin’s enthusiasm for spinal cord injury rehab and wellness extends further than her work at ICSCI and her pursuit of creating a successful Kennedy Krieger Racing Team. Erin has shown a passion for advocacy, and in 2012 was one of ten clinicians chosen, nationwide, to speak to congressional representatives and advocate for complex medical equipment.

“Teaching and advocacy are important to me. I guess that’s why I wanted to be a kindergarten teacher,” says Michael.

Although Erin is officially an ICSCI veteran, in the early days it did not take long for her to feel at home here at Kennedy Krieger. “I love the camaraderie in this department and the dedication to the patients,” she says. “We’re extremely supportive of everyone.” But that’s not her favorite thing about working at ICSCI. When asked, she answers simply: “The patients.”

Upcoming ICSCI Events Patient Q&A Sessions: March 8, 2013 April 12, 2013 May 10, 2013 June 14, 2013 For topic information and times, please visit spinalcordrecovery.org. To RSVP, please email ICSCInews@kennedykrieger.org.

Recent ICSCI Research and Professional Publications Wellness Kimberly Obst wrote an article entitled “Wheelchair Wellness” in Rehab Management. September 2012.

Regeneration

Regeneration Generation Support Group:

Daniel Becker and John McDonald were published in the Handbook of Clinical Neurology. The article is entitled “Approaches to repairing the damaged spinal cord: overview.”

2012; 109:445-61

March 25, 2013 April 22, 2013 May 27, 2013 June 24, 2013 Please e-mail ICSCIsupport@kennedykrieger.org for topic information or to RSVP for an upcoming meeting.

John McDonald, Cristina Sadowsky, and Argyrios Stampas were published in the Handbook of Clinical Neurology. The article is entitled “The changing field of rehabilitation: optimizing spontaneous regeneration and functional recovery.” 2012; 109:317-336

Contemporary Trends in Spinal Cord Injury Management June 17, 2013 For more information, visit kennedykrieger.org/SCIsymposium or e-mail SCIsymposium@kennedykrieger.org.

Imaging Daniel Becker co-authored an article entitled “Neurological picture. Nitrous oxide-induced myelopathy with inverted V-sign on spinal MRI” in the Journal of Neurology, Neurosurgery and Psychiatry. 2012; 83(9):915-6 Enzyme Therapy – Animal Models

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 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

Dr. Andres Hurtado co-authored an article entitled “Systemic administration of a deoxyribozyme to xylosyltransferase-1 mRNA promotes recovery after a spinal cord contusion injury” in Experimental Neurology. 2012; 237(1):170-9

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.

Visit us at helpkids.kennedykrieger.org

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ICSCI in the News: “From horseback-riding to a wheelchair and back” on CNN.com, May 9, 2012 Blog post written by ICSCI patient Krystal Greco.

“Disabled athletes shine in Baltimore Running Festival” in The Baltimore Sun, October 13, 2012 “A ‘liberating’ experience: Former quadriplegic participates in 5K run” in the Hattiesburg American, October 21, 2012

Dear John, I’ve noticed that some other departments have social workers, and there is a Social Work Department at Kennedy Krieger. What do they do?

Does ICSCI intend to add a social work component?

Signed, Curious

Dear Curious, “The Extra Mile” in Baltimore Magazine, October 2012 issue Profiles several of the awe-inspiring ICSCI patients who participated in the first-ever Kennedy Krieger Baltimore Running Festival charity team on October 13, 2012.

“Virtual Sailing program helps the disabled” CNN video, October 16, 2012 On September 15, 2012, CNN recorded John McVey and several other ICSCI participants in the Virtual Sailing Simulator program during their first on-the-water sailing experience at the Baltimore Inner Harbor. In this 90-second clip, the viewer gets a glimpse into the VSail program and its benefits. “We are very excited that CNN got to capture some of our VSail participants in their first on-the-water experience,” says Dr. Albert Recio. “Sailing is one of those recreational activities that promotes self-independence for our patients, and studies have shown that physical and psychological well-being is correlated to activity. Given the fact that our philosophy at ICSCI is to look outside the box and provide a holistic approach to treatment, sailing and virtual sailing are great opportunities to foster community integration for the spinal cord injured through participation in sports.”

“Truly Grateful” in Essence magazine, December 2012 issue Tells the story of ICSCI patient Perneita Farrar’s determination to walk down the aisle at her wedding.

For these and other ICSCI stories in the news, please check out our website: spinalcordrecovery.org/ICSCI-News.php.

That’s a great question, and I’m glad you asked.

Social workers play a varied role within Kennedy Krieger. Their purpose is to enable individuals and their families to use their natural strengths to manage the ongoing realities and stress of disability or medical conditions that affect individual, family, and community functioning and relationships. In January, ICSCI welcomed Rachael Pearce, LGSW, to the ICSCI team. She will be working with ICSCI part-time, primarily with our outpatient team, but she will also have a presence in our inpatient unit. She will be working closely with our case management nursing team and ICSCI psychologist Dr. Jennifer Stevenson to identify and meet the needs of our patients who require or are interested in social work assistance.

Sincerely,

John The team appreciates and encourages questions from employees, patients, family members, and all ICSCI supporters. Submissions may be sent to Dr. John W. McDonald, Executive Director of the International Center for Spinal Cord Injury, by e-mail to ICSCInews@kennedykrieger.org. Not all questions will be published due to space limitations, but unpublished questions will be answered by e-mail.

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

Spinal Cord Injury Updates Editor Anna Corrine Schneider Contributing Writers Visar Belegu, Robin Locks, and Anna Corrine Schneider Art Director Amy Mallik

707 North Broadway Baltimore, Maryland 21205

COPy EDITOR Kristina Rolfes Proofreader Nina Pettis

Program Spotlight Weight Management Program According to the Centers for Disease Control and Prevention (CDC), more than one-third (35.7%) of adults in the United States are obese. The numbers are even higher among those with disabilities, and research has shown that individuals with neurological disorders such as spinal cord injury and transverse myelitis are at an even higher risk for difficulty controlling weight. “While it can be difficult to lose weight or even maintain a healthy weight, it is not impossible,” says Dr. Cristina Sadowsky, medical director of the International Center for Spinal Cord Injury (ICSCI) clinic. “We know that some of our patients really struggle with this issue, so when we launched the Wellness Center program, we decided to also offer a specific Weight Management program as well.”

The new Weight Management (WM) program emphasizes the importance of combining increased physical activity with maintaining a healthy diet. In addition to having unlimited access to the “Life Through Motion” Wellness Center and all of its exercise equipment, WM program clients also receive two medical consultations with a physician, fitness level evaluations, personalized exercise programs, and weekly weight and body measurements. But, as with any weight management program, motivation is key. The staff provides participants with the moral support they need to promote their progress, and encourages clients to maintain and optimize their workouts.

Dorothea Mardaga exercising on one of the Wellness Center’s functional electrical stimulation cycles.

Often, the hardest part of losing weight is modifying eating habits to achieve a healthy diet. It can be especially difficult for those with paralysis, because they no longer process food the same way as someone without a disability. Major muscle groups that help burn calories are now paralyzed and therefore no longer burn calories at the same rate. For many people, this leads to excess calories being stored as fat. Therefore, in addition to providing WM clients with access to healthy, low calorie recipes and numerous nutritional resources, the program also utilizes a Kennedy Krieger dietician with expertise in weight management. She provides program clients with personalized “healthy tips” and gives formal counseling to qualified participants. In addition, the program also encourages individuals to utilize the Weight Watchers program. Sadowsky notes that “Studies have shown that commercial weight loss programs, such as Weight Watchers and its PointsPlus system, sometimes work better than physician/ nutritionist based ones.”

The staff is excited about the new program. “Seeing our patients’ progress has been amazing,” says Christy Sachs, manager of the Wellness and Weight Management programs. “We’re really excited about the results we’ve seen.”

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