Letter From the Director

Dr. Cristina Sadowsky

Happy summer! I hope this finds you staying cool in the summer heat but still having the opportunity to enjoy summer activities and being outside.

Remember: When you are enjoying the outdoors, as temperatures rise, extra caution is needed. Here are some tips to keep you healthy this summer:

  • Stay hydrated.
  • Limit your time outside on extremely hot days.
  • Stay cool by finding air-conditioned spaces if your home is not air-conditioned.
  • Wear a hat, sunglasses and light-colored clothing.
  • Wear sunscreen of SPF 30 or higher, and try to stay out of the sun during the hottest part of the day (10 a.m.–2 p.m.)

Be sure to read about our active Adaptive Sports Program. Not only were our handcyclists representing Kennedy Krieger Institute in the Boston and Nashville marathons, but closer to home, program members participated in biking, bowling and other fun outdoor activities, all designed to promote good health among individuals with spinal cord injuries.

To close, I want to share with you some news about staffing changes. Tom Novotny, the long-time director of operations and business development at the International Center for Spinal Cord Injury (ICSCI), is moving to a new position at Kennedy Krieger, in the Office of Philanthropy. We will miss him, but I know he will remain an active supporter of the ICSCI, and I am confident that we will still see him at key events. I am pleased to announce that Anna Schneider-Simms, the ICSCI's assistant director of operations and business development, will step into the director role and enable a smooth transition, as Anna has been with the ICSCI for 16 years. I wish both Tom and Anna good luck in their new roles.

All the best,
Cristina L. Sadowsky, MD
Clinical Director
International Center for Spinal Cord Injury

Adaptive Sports Recap

Our spring season was full of excitement. In case you missed it:

Boston Marathon

Two of our athletes, Nick Antlitz and Jordan Christman, competed in the Boston Marathon’s handcycle division. This was the first time Team Kennedy Krieger participated in this prestigious event.

For more information about their personal journeys and their participation in one of the premier marathons, check out these news stories:

A special thank-you to those who ordered one of the exclusive Boston Marathon shirts (“We’re bringin’ the Hon from B’more to Beantown”). The funds raised from the sale of the shirts will offset some of the expenses for this event.

Nashville Marathon

Seven handcyclists represented Team Kennedy Krieger on the streets of Music City in the Rock 'n' Roll Nashville (full) Marathon in April. Finishing times were:

  • First-place finisher Ryan Wills: 1:53:31
  • Second-place finisher Jim Morrison: 1:55:01
  • Third-place finisher Michael Henley: 2:04:06
  • Paul Libby: 2:12:43
  • Shane Horn: 2:19:31
  • Jordan Christman: 2:28:16
  • Madeleine-Camille Preuninger: 2:53:28

It was an incredible showing by Team Kennedy Krieger! Congratulations to all for your great accomplishments.

Adaptive Sports, Recreation and Community Resource Fair

We held our second Adaptive Sports, Recreation and Community Resource Fair in May. Participants may have noticed a slight change in the name of the event. We felt it was important to extend beyond adaptive sports, and we provided a number of resources for the differently-abled community. We will be announcing a date for 2025 in the fall.

Impossible Dream

The Impossible Dream adaptive sailing catamaran made a quick stop here in Baltimore and took several individuals with spinal cord injuries around Baltimore’s Inner Harbor for a cruise.

Hand cyclists in Team Kennedy Krieger uniforms at the starting line of the Baltimore Running Festival.

Coming Up

  • Sundays, May 12–August 11: Wheelchair lacrosse practice (Interested in learning how to play wheelchair lacrosse? Come check it out!)
  • July 16: Sailing with CRAB
  • July 25: Bowling
  • August 16–18: Wheelchair Lacrosse USA national championship tournament
  • September 25: Adaptive Bike Clinic
  • September (exact date to be determined): Fishing
  • October 19: Baltimore Running Festival
  • October (exact date to be determined): Return of the Impossible Dream

Contact us: Please email AdaptiveSports@KennedyKrieger.org with any questions or for more information on a specific program or opportunity.

Follow us! Join our Facebook group by searching for “Team Kennedy Krieger Adaptive Sports” on Facebook. Request to join the group by answering the questions and acknowledging the group’s rules.

Follow us on Instagram! Find us: @TeamKennedyKrieger

Not interested in competitive adaptive sports? Join our program anyway! We offer noncompetitive adapted recreational activities such as the ones listed above, plus you can learn about what Team Kennedy Krieger is up to and how to get involved.

Advocacy Spot

Welcome to the Advocacy Spot! Here, we aim to keep you abreast of today’s hot topics in legislation that impact access to services, equipment and/or the community. By keeping you informed, we hope to help get you directly involved with promoting change and protecting the rights of individuals with disabilities! Keep reading to learn more.

Current Issue: Access to Community-Based Services and Care Support

  • Home and Community-Based Services (HCBS) Access Act (S. 762/H.R. 1493):
    • Secures the fundamental right for all Americans to live in the community by mandating that Medicaid cover HCBS
    • Increases Medicaid funding for HCBS
    • Eliminates waiting lists for HCBS and streamlines access by eliminating the need for states to repeatedly apply for waivers
    • Provides grant funding for states to expand their capacity to meet the need for HBCS
    • Improves stability, availability and quality of direct care providers to help address the workforce shortage
    • Provides training and support for family care support professionals
  • Better Care Better Jobs Act (S. 100/H.R. 547):
    • Aims to expand access to long-term care by increasing funding to state Medicaid programs and requiring coverage of personal care services
    • Increases payments to direct care workforce to improve wages, increase recruitment and retention of caregivers, and create training opportunities
    • Encourages states to build direct care workforce registries to make it easier to find caregivers
    • Permanently reauthorizes the “Money Follows the Person” program, allowing those in institutional settings to successfully transition back to the community

Places to Get Information/Get Involved:

If you are interested in getting more directly involved in advocacy and/or receiving up-to-date alerts regarding pressing issues, here are some organizations that provide advocacy resources and/or that welcome you to join advocacy groups:

Thanks for reading! We encourage you to get involved with issues that matter to you! You can play a significant role simply by educating our legislators and/or the staff of the Centers for Medicare and Medicaid Services (CMS) on how these issues impact your daily life and/or by making a personal connection with your members of Congress and their staff members.

Research Studies

We have two active studies currently underway at the ICSCI:

  • Our ASPIRE study is set to wrap up this fall. This multi-center study evaluates the impact of transcutaneous spinal stimulation (TSS) with an electrode array and newly developed stimulator on upper extremity functioning.
  • We are actively recruiting for our pediatric TSS study. This study evaluates the impact of TSS on walking ability in children with incomplete spinal cord injuries. Study sessions involve body weight-supported treadmill training paired with TSS, followed by overground interventions focusing on standing, walking and functional mobility.

For more information about any of our research studies, or to find out how to get involved, please contact our research coordinator, Shannon Inches, at 443-923-9235.

A man and a woman wearing Team Kennedy Krieger shirts at the Baltimore Running Festival. The woman is standing with her arm on the man's shoulder as he sits in a mobility device. Both are smiling.

Baltimore Running Festival—Registration Is Now Open!

Have you participated in the Baltimore Running Festival in the past and want to do so again? Would you like to run a 5K through Baltimore? Is participating in this kind of event on your bucket list?

If you answered “yes” to any of these questions, join Team Kennedy Krieger at this year’s Baltimore Running Festival on Saturday, October 19, to bring “Hope Through Motion” to patients and their families at Kennedy Krieger Institute!

With our charity team, we aim to increase the number of Kennedy Krieger patients and supporters able to participate in the festival, and to open the door to improved physical fitness for those with disabilities. The funds raised from this event will support rehabilitation programs throughout Kennedy Krieger and the intensive, innovative therapies that allow the brain and spinal cord to recover from injuries and genetic conditions.

Joining Team Kennedy Krieger will give you the perfect opportunity to get active and raise money for an important cause. As a member of Team Kennedy Krieger, you’ll receive lots of great benefits, including free registration for your race! If you can’t participate but still want to support Team Kennedy Krieger and the patients the festival benefits, register instead as a virtual racer and participate online.

Visit Kennedy Krieger’s website to join the team and learn more.

Make a Splash at Maple Lawn

A teenage boy receives therapy in a swimming pool.

To bring the healing benefits of water to the ICSCI’s Maple Lawn location, we are holding a fundraising campaign to outfit the space with a pool, underwater treadmill, changing rooms and Guldmann patient lifts.

Please help us bring aquatic therapy to Maple Lawn! Every dollar counts and helps us get closer to our goal. You can also set up your own fundraising page and ask your friends and family to support this campaign.

Visit KennedyKrieger.org/MakeASplash to learn how you can help us bring a pool to our Maple Lawn location.

New Books Created to Educate Children About Spinal Cord Injury

For children who have a spinal cord injury or who have a family member with this type of injury, explaining the injury to family, friends and even themselves can be a challenge.

Two new booklets created by Kennedy Krieger clinicians in partnership with the Christopher and Dana Reeve Foundation fill in that gap. Janet Dean, a certified pediatric nurse practitioner, and Emily Montag, a certified child life specialist at Kennedy Krieger, created two booklets—one for preschool-age children and the other for school-age children—that provide an overview of the spinal cord, hands-on activities, patient stories and photos. Using age-appropriate language, these easy-to-understand booklets are designed to help children better understand spinal cord injuries and the effects the condition has on an individual.

These booklets are free and are available at the Christopher and Dana Reeve Foundation's website

Introducing the ADL Suite at Maple Lawn

A big part of the rehabilitation process includes practicing activities of daily living (ADL). After spending days or months recovering from a spinal cord injury, the transition from hospital to home can be intimidating. With tools like our ADL suite, we can help our patients reestablish a daily routine.

In the Maple Lawn ADL suite, which is currently under construction, patients will be able to practice their ADLs under the guidance of our certified therapists. The ADL suite will include countertops, a cooktop, a kitchen island and cabinets that are all height-adjustable, as well as all the other things needed for food prep, including a sink, refrigerator, microwave and dishwasher. The suite will also have a bathtub and Murphy bed.

The ADL suite will allow our therapists to translate the recovery patients achieve through our activity-based restorative therapy (ABRT) interventions in the clinic to real-life functioning. It will also allow patients to learn about the residential kitchen products available to improve accessibility at home.

Burgundy short sleeve Hope Through Motion t-shirt.

The ADL suite at Maple Lawn is slated to be completed this fall.

Get Your ‘Hope through Motion’ Swag

Show your “Hope Through Motion” pride with a custom T-shirt you can now order online! Check out our short- and long-sleeved T-shirt options.