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Spinal Cord Injury


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

SPRING 2014 • Vol. 5, Issue 1

A Word from the Director

Greetings from the International Center for Spinal Cord Injury at Kennedy Krieger Institute! 2013 was a busy year for ICSCI. The clinic and outpatient therapy team treated 672 patients, and our inpatient team treated 41 pediatric inpatients last year. In September, our center hosted our first ever two-day activity-based restorative therapy continuing education workshop for occupational therapists, physical therapists, physical therapy assistants, and physicians. Dr. Cristina Sadowsky and Kennedy Krieger Institute board member Vickie Rosellini hosted a successful fundraising event on behalf of the clinic, and our second annual Baltimore Running Festival Charity Team for Kennedy Krieger Institute was an overwhelming success. We are excited to announce that our laboratory team was recently awarded a $2 million grant from the Joint Warfighters Medical Research Program to continue our research on advanced restoration therapies in spinal cord injury. This project will allow us to continue investigating the role of functional electrical stimulation (FES)-based restorative therapies in promoting neurological and functional recovery in chronic SCI.

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

Thank you for your support!

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

A Day at the Races

By Robin Locks

A few days before the Baltimore Grand Prix 2013, ICSCI patients and families were invited to experience their own private Grand Prix day—known as the Day at the Races—thanks to former race car driver Sam Schmidt and the Sam Schmidt Paralysis Foundation. His foundation has made the event possible for our patients and families since 2010.

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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.

INSIDE THIS ISSUE A Word from the Director A Day at the Races Advocacy Spot Spotlight on Research Employee Profile Dealin’ 4 Kids Running Festival Follow-Up Upcoming Events ICSCI News Recent Publications Dear John

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A Day at the Races

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Schmidt was injured in a car accident 13 years ago that left him quadriplegic. Although he no longer races, he still loves the sport, and owns his own Indy Race Car Team. For Schmidt, the annual Day at the Races is a chance to share his passion for racing with others who have spinal cord injuries. For the International Center for Spinal Cord Injury, the Day at the Races has become an annual tradition, eagerly anticipated by patients and staff alike. This year, 10 ICSCI patients attended the event, along with family, caregivers, and Kennedy Krieger staff, including Patrick Rummerfield, Robin Locks, Scott Meyer, and Dr. John McDonald. ICSCI guests had the opportunity to play games and win prizes, then enjoyed lunch with Schmidt in his hospitality tent, which was filled with excellent food and conversation. There was an overall feeling of excitement and anticipation as everyone waited to see what the next activity would bring.

s Patients, families, and Indy race driver Simon Pagenaud

The event’s Accessibility Ambassadors ensured that everyone safely crossed the track and the race grounds. Some walked, while others wheeled or were transported by golf carts to the paddock area, where the race cars are kept. There, guests had a chance to see and touch race cars, take photos, and get autographs from drivers. During the ICSCI visit, the drivers and race team got a call from the track, said “We’ve got to go,” and off they went! The crew took off the wheels of two race cars, then lifted and carried them off to the track for a qualifying heat, while the ICSCI group watched in amazement. It was a great day filled with fun and lasting memories. We would like to thank Sam Schmidt; Ida Cahill, president of the Sam Schmidt Paralysis Foundation; and Nick Bella, development assistant of the foundation. As a show of our appreciation, we are sending them a collage of photos of our patients and staff enjoying a Day at the Races. We want them to be able to look back on this day knowing what a wonderful gift they shared with ICSCI and its families!

s Indy driver and Grand Prix winner Simon Pagenaud signing autographs

s Indy driver Tristan Vautier signing autographs


Advocacy Spot Welcome back to the Advocacy Spot! Here, we aim to keep you abreast of today’s hot topics in legislation that will impact access to services, equipment, and other aspects of healthcare. By keeping you informed, we hope to motivate you to advocate, which will promote change and protect your right to quality care! On a daily basis, healthcare providers and equipment suppliers are advocating for you; however, your voices and your stories will make the greatest impact. By Erin Michael, PT, DPT, ATP/SMS In this issue, we focus on legislation that affects your access to durable medical equipment, and updates on the progress of companion bills in the House and Senate aimed at improving your access to customized wheelchairs. Though both issues involve the Medicare program, they affect each and every one of you, because Medicare is the “trend setter.” In other words, eventually, other insurers will follow suit.

Competitive Bidding:

Complex Rehabilitation Technology (CRT):

July 1, 2013, initiated “Round 2” of Medicare’s Competitive Bidding Program. In this program, for those who live in a Competitive Bidding Area (CBA), Medicare will only cover products from vendors with contracts for each specific product category. A vendor must have a contract for each of the categories listed below:

In the previous issue, we reviewed the “Ensuring Access to Quality Complex Rehabilitation Technology (CRT) Act” (H.R. 942/S. 948). The main goals of this legislation are to create a separate benefit category for customized manual and power wheelchairs (i.e., CRT), and to eliminate Medicare’s “in the home” restriction. This change will account for the level of technology utilized; the skill and hours needed to evaluate someone for such a device; the full range of services furnished by companies that provide these products; the training to ensure proper use of the equipment; and the complexity and unique nature of this equipment. Additionally, this legislation will allow Medicare beneficiaries to get wheelchairs that allow them independence across all potential environments of use, instead of just within the home.

• Oxygen Supplies and Equipment • Standard (Power and Manual) Wheelchairs, Scooters, and Related Accessories • Enteral Nutrients, Equipment, and Supplies • CPAP Devices, Respiratory Assist Devices, and Related Supplies and Accessories • Hospital Beds and Related Accessories • Walkers and Related Accessories • Support Surfaces (Group 2 Mattresses and Overlays) • Negative Pressure Wound Therapy (NPWT) Pumps and Related Supplies and Accessories In other words, if you live in a Competitive Bid Area (CBA), you will, most likely, be required to obtain equipment from multiple vendors or providers (e.g., your wheelchair will be from one vendor, while your hospital bed will be from another, your oxygen from yet another company, and so on). To find out if you live in a CBA and who your contracted providers are for each product category, visit Many national consumer, clinician, and industry advocacy organizations have objected to this program. However, Medicare has implemented it, and Congress is reporting that it has not heard any complaints from Medicare beneficiaries. As a result, Congress is not motivated to replace the program with a more legitimate market pricing program. If you are currently experiencing issues with access to home medical equipment and repairs, please share your story through the Medicare Beneficiary Complaint Hotline at 800-404-8702. Change will only come with action.

Thanks to the ongoing advocacy efforts of many national consumer, clinician, and industry organizations, awareness of CRT is increasing among federal, state, and private policy makers, and members of Congress continue to sign on with their support. To date, six senators and 83 representatives have signed on, with good bipartisan support. However, we still have a long way to go, and politicians need to hear stories from end users. You, the user, have the power to make the most impact by explaining to your representatives in Congress what your customized wheelchair does for you, or how not getting the wheelchair you truly need has impacted your daily life. To learn more about this bill, monitor the progress, and learn how to contact your congressmen and -women, please visit

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

Saturday, October 18, 2014 • M&T Bank Stadium

Join Team Kennedy Krieger Whether it’s the kids fun run, 5k, Team Relay, or half or full marathon, we’ve got space for you! By registering for the Kennedy Krieger Charity Team, you are agreeing to raise $250 for our spinal cord injury program and the training needs of patients with disabilities who participate in the event.

Sign up now and receive: • Free registration • Free carb-loading pasta party catered by Sabatino’s the evening before the race • Kennedy Krieger Institute Under Armour team shirt • Participant goody bag with all kinds of cool free stuff • Access to the team tent to secure your belongings during the race • Morning coffee and breakfast, and post-race snacks and refreshments

Become a Kennedy Krieger Virtual Racer! Can’t make it to the race, but still want to support Kennedy Krieger? Choose the “virtual racer” option during registration, and enjoy the perks of being on our team without having to race. By registering to be a “virtual racer,” you are agreeing to raise $100 for Kennedy Krieger Institute. See our website for more information.

Registration is open to everyone! For more information or to register online, visit Contact us at or 443-923-7300.


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.

Biomaterial Therapy: A Possible Treatment for Spinal Cord Injury By Anna Miglioretti Clinical treatment of traumatic spinal cord injuries (SCI) is a challenge in need of new options for treatment interventions. When SCI occurs, there is immediate physical damage of tissue at the injury site, followed by a cascade of events including hemorrhaging, inflammation, loss of the axonal insulation called myelin (controls the speed of electrical signals that propagate along the axon) and the cells that produce myelin (oligodendrocytes), scar tissue formation by astrocytes, and dieback of axons that survived the initial injury. All of these factors contribute to an environment that restricts cell survival and axonal growth. Animal models of traumatic SCI have shown that the spinal cord attempts to reorganize and amend the axonal connections after injury. However, without interventions, this ability to change, regenerate, and reconfigure falls short of meaningful functional and sensory recovery in the majority of patients with SCI. These findings have set the stage for developing therapies that can enhance the adaptability of the surviving spinal cord tissue to produce meaningful recovery. One such approach is the use of biomaterials to promote axonal elongation and remyelination. Biomaterials have been on the forefront of remyelination therapy in SCI. Researchers designing biomaterials for SCI focus on remyelination because it is essential for preserving neurological functions. One of the first success stories in biomaterial-based therapy for SCI was NeuroGel. Its structure resembles that of neural tissue, because it consists of interconnected pores and is water based. An animal-based study using NeuroGel showed mature oligodendrocytes present in the implant, and increased myelination around axons that were present in the implant, as well. Alginate, another biomaterial in SCI research, is derived from a carbohydrate component in brown seaweed. Animal studies with this material showed another myelinating cell, Schwann cells, surrounding and myelinating axons that extended into the implant eight weeks after SCI. This finding is very important because it demonstrates the ability of alginate to promote myelination by providing a suitable stage for myelination.

Studies focused on promoting remyelination for SCI are ongoing to determine safety and efficacy of biomaterials in the spinal cords of SCI patients. The scientific community is optimistic and looking forward to additional results in which biomaterials improve sensory and motor recovery in SCI patients. While initial studies suggest biomaterials have the potential to produce beneficial outcomes, biomaterials alone do not lead to complete motor or sensory recovery. Interventions that combine biomaterials with pharmacological agents, growth factors, cell-based therapy, electrical stimulation, and rehabilitation are currently being evaluated for their ability to further enhance recovery after SCI. Our pre-clinical research program focuses on understanding the biological effects of SCI and using the latest scientific tools to enhance potential therapies. One of our research areas focuses on the combination of stem cell窶電erived oligodendrocyte precursor cells (OPCs) and a mesh-like biomaterial. We are currently investigating whether the stem cell窶電erived OPCs placed in this material have the ability to survive and elongate axons. We are also investigating the ability of these OPCs to differentiate into mature oligodendrocytes that can myelinate surrounding axons. The future of biomaterials used alone or in conjunction with other therapies has great potential for increasing recovery after SCI, and we are enthusiastic to be at the forefront of discovery.

Employee Profile Angela Huff, RN, BSN Pre-Admission Nurse Care Manager The American Case Management Association, a non-profit association dedicated to the support and development of the profession of case management, defines case management as “a collaborative process of assessment, planning, facilitation, care coordination, evaluation, and advocacy for options and services to meet an individual’s and family’s comprehensive health needs through communication and available resources.” For Angela Huff, ICSCI nurse care manager, case management means so much more. She is often the first person at ICSCI to talk to prospective patients. She reviews their records, listens to their stories, works with our insurance coordinator, and guides patients through the process of entering the program. For out-ofstate patients, she goes a step further and provides resources for transportation, local attractions, and accommodations. But she doesn’t want to be just “the voice on the phone.” Angela tries to meet all new patients after they arrive at ICSCI. “It is great getting to meet [patients and their families] in person after speaking to them for several months.” Angela says even when she was young, she knew she wanted to take care of people. “I enjoyed being around people and felt like I could help someone make a difference in their life. I knew that I always wanted to be in the medical field.” After earning her nursing degree from Catonsville Community College (now Community College of Baltimore County), she worked at a nursing home for a year before seeing a newspaper advertisement for Kennedy Krieger Institute. “At other hospitals, you see patients for maybe two days—you don’t really get to know them. [Knowing that Kennedy Krieger offered] rehabilitation was a big draw.”


In 1998, Angela joined Kennedy Krieger Institute as a nurse on the inpatient unit. After completing her bachelor’s degree in 2010, she transitioned to ICSCI as our care manager. “I learned a lot on the inpatient floor and loved working with patients with spinal cord injuries…they just seem to have such a great outlook on life even though they have such traumatic injuries. And it was pretty inspiring to see these patients.” Originally from Catonsville, Maryland, Huff commutes every day from southern Pennsylvania. “I take the back roads to get here and it helps me to unwind.” During her off time she enjoys supporting her husband, an expert motorcycle racer, and her three children, who all compete in sports. This year, she completed the half marathon at the Baltimore Running Festival as a member of Team Kennedy Krieger. Last year, she completed the 5K for Team Kennedy Krieger, and although she has been running for the past five years, the 5K was her first official race. In September, Huff, fellow ICSCI care manager Lisa Trotta, and director of Care Management Jody Luttrell were chosen to present an educational poster, “Nurse Case Management in an Outpatient Spinal Cord Rehabilitation Setting,” on their role in case management at the Annual Academy of Spinal Cord Injury Professionals Educational Conference. Angela admits that sometimes “hearing [prospective patients’] stories and their struggles is difficult. Patients don’t have our kind of therapy in their hometown and just trying to get here…the many challenges they face can be difficult.” But she says learning her patients’ stories is also the best part of her job. “I get to know the patients’ backgrounds and hear what they have gone through, whether it’s a new injury or many years out. The fact that they come here for the hope to recover and that they are very excited to come here… I just love how hopeful and positive they are.”


Dealin’ 4 Kids On September 8, 2013, ICSCI medical director Dr. Cristina Sadowsky and Vickie Rosellini, Kennedy Krieger Institute board member, hosted a fundraising event benefiting ICSCI at Carlo’s Italian Bistro in Cockeysville. The night was an overwhelming success and featured music, food, games, dancing, and both a live and silent auction. Dealin’ 4 Kids was attended by 200 people and had something for everyone to do, from dancing to Frank Sinatra, to doing the disco, to playing antique slot machines, blackjack, roulette, and a Vegas wheel.

Top row: Dara Schnee, Congressman Dutch Ruppersberger, bottom row: Kay Ruppersberger, Vickie Rosellini, and Cristina Sadowsky

In addition, a football from Super Bowl XLVII signed by MVP Joe Flacco and donated by NFL Films was raffled off. The Dealin’ 4 Kids event raised over $65,000 for the Center, and another $10,000 was raised in the football raffle.


s Cristina Sadowsky and Tom Novotny

Guests all dressed up in their roaring ‘20s apparel

s Restaurant owner Carlo Schiattarella, auctioneer Scott Donohoo, former Maryland Governor and Mrs. Robert Ehrlich, and Vickie Rosellini

s Blackjack table

Running Festival Follow-Up On October 12, over 300 people participated in the Baltimore Running Festival for Team Kennedy Krieger. Twenty-three patients raced in the 5K, half marathon, or full marathon handcycle race, or raised money as “virtual racers.” The team raised over $120,000 and funds will be used to continue our racing scholarship program for hand cyclists who would like to participate in other out-of-state events; acquire new high-tech hand cycles to be loaned to patients (we were able to purchase six with the proceeds from last year’s event); purchase Smart Wheels for the therapy clinic—a new technology that helps analyze wheelchair users’ push action and find the most efficient motion to relieve the possibility of chronic pain; help extend patients’ quality of life and decrease extended medical costs; and fund scholarships for our patients to participate in the Life Through Motion Wellness Center. A special thank you to all of the patients who participated in this year’s Team Kennedy Krieger Baltimore Running Festival 2013! You inspire us, and we deeply appreciate your commitment to ICSCI!

Full Marathon Hand Cycle James Cook Kevin Dyer Brian Etzel Rick Fox Marshall Garber Paul Libby Jeremy Wells Heather Zeitlin Half Marathon Thomas Rudowsky 5K Race Sarah Alexander Sara Cooper

Dimitri Farantos Giselle Jones Harriett Miller Jerry Sersen Sarah Trzepacz Kids Fun Run Ryan Anders Lauren Bell Jaxson Delia Diego Mendoza Virtual Racers Judy Baker Christopher Mason-Hale Santa Wallace

s Diego Mendoza and his mother after completing the Kids Fun Run (Walk) with a rolling walker. s Marshall Garber (top left), Kevin Dyer (top right), and Jeremy Wells (right) await the start of the full marathon.


s Six of the eight members of this year’s hand cycle team posing before transferring to their cycles!

Shannon Corbey s (right) provides Sara Cooper (middle) with a helping hand along Eutaw Street on her way to finishing the 5K.

s ICSCI physical therapist Nia Wallace (left), patient Jerry Sersen (right), and his wife are all smiles before taking on the 5K.

s Alison Staples (left) and Meghan Greve (right) assist Giselle Jones (middle) through Camden Yards on the way to the 5K finish line.

Team Kennedy Krieger Baltimore Running Festival Press:,0,6362470.story

Upcoming ICSCI Events

Recent ICSCI News

Patient Q&A Sessions: May 16, 2014 June 11, 2014

Nashville ABRT Workshop Recap

For topic information and times, please visit To RSVP, please email Celebration of TM Day and Walk-Run-N-Roll Kickoff June 9, 2014, Towson, MD 4th Annual Contemporary Trends in Spinal Cord Injury Management Symposium June 16, 2014, Baltimore, MD 2nd Annual JHTMC Regional Transverse Myelitis Symposium June 21, 2014, Baltimore, MD 2014 Maryland Walk-Run-N-Roll for the Transverse Myelitis Association June 22, 2014, Towson, MD

Rehab Management: Study results highlight virtual sailing’s benefits to SCI patients

Progress in Practice: Activity-Based Restorative Therapies September 26-27, 2014, Baltimore, MD

Rehab Management highlights the latest research from Dr. Albert Recio finding that using a hands-on sailing simulator assisted participants in safely learning sailing skills. Read more at:

Spinal Cord Injury Updates

Recent ICSCI Publications

Editor Anna Corrine Schneider

Designer Chris Sheeler

Contributing Writers Anna Miglioretti, Robin Locks, Erin Michael, Anna Corrine Schneider

COPy EDITOR Kristina Rolfes

Vadivelu S, Willsey M, Curry DJ, McDonald JW 3rd. Potential role of stem cells for neuropathic pain disorders. Neurosurgical Focus, 35(3):E11.

Proofreader Nina K. Pettis

Art Director Amy Mallik

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.


On September 14-15, Rebecca Martin, ICSCI manager of Clinical Education and Training, led the first ever two-day Progress in Practice: Activity-Based Restorative Therapy workshop in Nashville, TN. Six highly specialized ICSCI therapists instructed attendees on the theory and mechanics of activity-based restorative therapy (ABRT). The workshop included clinical instruction and hands-on breakout sessions for over 30 attendees, including physicians, physical therapists, occupational therapists, and physical therapy assistants. All attendees rated the workshop highly and would recommend the workshop to a colleague. The group held a similar workshop in Tampa, FL, on February 22-23, 2014.

Kwon BK, Soril LJ, Bacon M, Beattie MS, Blesch A, Bresnahan JC, Bunge MB, Dunlop SA, Fehlings MG, Ferguson AR, Hill CE, Karimi-Abdolrezaee S, Lu P, McDonald JW, Müller HW, Oudega M, Rosenzweig ES, Reier PJ, Silver J, Sykova E, Xu XM, Guest JD, Tetzlaff W. Demonstrating efficacy in preclinical studies of cellular therapies for spinal cord injury—How much is enough? Experimental Neurology, 248:30-44.

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

Recio AC, Becker D, Morgan M, Saunders NR, Schramm LP, McDonald JW 3rd. (2013). “Use of a Virtual Reality Physical Ride-On Sailing Simulator as a Rehabilitation Tool for Recreational Sports and Community Reintegration: A Pilot Study”. American Journal of Physical Medicine & Rehabilitation, 92(12), 1104-1109. Researchers at the Kennedy Krieger Institute announced the results of a pilot study demonstrating use of a virtual therapeutic sailing simulator as an important part of rehabilitation following a spinal cord injury (SCI). Published in the American Journal of Physical Medicine & Rehabilitation, findings show that using a hands-on sailing simulator over a 12-week period helped participants safely learn sailing skills in a controlled environment, ultimately improving their quality of life by gaining the ability to participate in a recreational sport. For many individuals living with paralysis, participation in recreational sports may seem impossible or even unimportant. This study is one of the first to scientifically quantify the positive impact of therapeutic sailing following a spinal cord injury, including a significant increase in overall self-confidence and a sense of accomplishment among participants.

Dear John, I am interested in the research going on at ICSCI. Is there a way to receive updates or find out about recent research news? Signed, Interested in Research Dear Interested in Research, We are very proud of the work our research team is doing. In 2013, our clinicians and basic science researchers published 10 manuscripts and papers. We announce these publications in this newsletter and add links to each article on our website, as well. research-initiatives/publications/ If you are interested in obtaining a copy of any of these articles, email ICSCInews@kennedykrieger. org and request an electronic copy. For more formal updates, patients are encouraged to schedule an ICSCI lab tour by contacting Robin Locks, or attend one of our monthly Patient Q&A sessions.

MacDonald K. Safety in Numbers, From Admission to Discharge. Rehab Management. Nov 2013.

For more information regarding Q&As, please call 443-923-9227 or email

Learn More. Get Involved. Stay Connected.

For more information regarding lab tours, please call 443-923-7965 or email

Receive News, Updates, & Alerts Learn about news, advancements, inspiring stories, great events, and more through our publications, email updates, sms alerts, and online communities. 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. Join Us Online Visit our online communities to follow, watch, read, listen, and join the conversation.

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 Not all questions will be published due to space limitations, but unpublished questions will be answered by e-mail.

This is Living with a Spinal Cord Injury.

At the International Center for Spinal Cord Injury at Kennedy Krieger Institute, our team of physicians, therapists, and researchers are opening the door to possibilities, so patients can follow their dreams and live fulfilling, independent lives. Through innovative research, activity-based restorative therapies, and a focus on long-term recovery, we specialize in helping children and adults with spinal cord injuries to improve strength and overall health, restore function and sensation, and learn independence. Because a spinal cord injury shouldn’t keep patients from living out their dreams.

To learn more, call 888-923-9222, visit, or email us at {12}

International Center for Spinal Cord Injury Updates - Spring 2014  
International Center for Spinal Cord Injury Updates - Spring 2014  

The Spring 2014 edition of the newsletter from the International Center for Spinal Cord Injury at Kennedy Krieger Institute.