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NeuroHope at the NeuroRecovery Network Summit

The NeuroRecovery Network (NRN) held its annual summit at Frazier Rehabilitation Institute in Louisville, Kentucky last week.  NeuroHope is laying the groundwork to join the network later this year, and our staff was invited to attend and learn about the innovative therapy interventions that are being researched and implemented at NRN sites across the country and overseas.

The NRN is a collaboration of clinical sites tied to rehabilitation hospitals (Craig Hospital, Frazier Rehab Institute, Kessler Institute for Rehabilitation, Magee Rehabilitation Hospital, Ohio State University Medical Center) and independent sites aimed to continue aggressive therapy and wellness for patients after they leave the hospital system (Next Step, Courage Kenny, Journey Forward, NeuroKinex).

The inspiration to begin this unique network of sites began through the work of Dr. Susan Harkema and Dr. Andrea Behrman, whose research led to a better understanding of neuroplasticity, which is the ability of nerve cells in the central nervous system to develop new connections and learn new functions.  Their work provided new evidence about the role the spinal cord plays in stepping, standing, and interpreting sensory information to re-learn tasks.

The Christopher and Dana Reeve Foundation (CDRF) helped fund the original research, and in the years since, the Foundation has been devoted to translating results to the clinic to help patients recovering from and living with spinal cord injury.

The NRN revolves around providing Activity-based therapy, a specific technique that activates the nervous system below the injury level and focuses on strengthening muscle weakness and neurologic recovery.  In addition to specific manual techniques, a principle Activity-based intervention is Locomotor Training.  Locomotor Training allows injured individuals to repetitively practice standing and stepping using body weight support.  In a therapy session, the participant is suspended in a harness over a treadmill at a high speed while specially trained therapists move the legs and ankles using specific sensory cues to simulate walking.  As the person gains function, improvements in sitting, standing, core strength, circulation, and bone-density may occur.

Dr. Harkema is also a pioneer in implementing epidural stimulation in her work, which made global headlines in 2011 and 2014 for restoring movement in four spinal cord injured individuals.  Since then, the NRN has incorporated new methods of NeuroMuscular Electrical Stimulation (NMES) at their sites to target upper extremity function, increase movement, and improve neuroplasticity.  NMES uses parameters beyond typical electrical stimulation to excite the central nervous system and activate weakened muscles.

Drs. Harkema and Behrman delivered lectures at this year’s summit and worked with NRN staff members from sites around the country as they practiced evaluation and activity-based therapy techniques.

We were honored to be invited to the summit and learn from some of the best minds in the world of neuroscience.  NeuroHope will soon be one of just 13 sites in the world where these innovative techniques are available.

Learn more about the NRN below:

 

 

 

 

As SCI Research Advances, Therapy Must Be Accessible

It’s an exciting time for spinal cord injury (SCI) science and research.

The last 12 months have seen breakthroughs in laboratories and therapy gyms around country, and have led to papers published in some of the most reputable publications in the world. SCI foundations and medical organizations are aggressively pursing funds to finance research they hope may bring them closer to the cure for paralysis.  Directly linked to that cure, should it ever come, will be the need for an incredible amount of rehabilitative therapy.   Long-term therapy that, in the current health care system, is nearly impossible to receive.

To be clear, the “cure” for paralysis is not around the corner.  The scientific community is nowhere close.   Strides are being made however, in discovering some of ways the nervous system works.  Scientists and doctors are embracing neuroplasticity, the concept that the nervous system is not necessarily irreparable, but in some cases can “learn” to retrain itself over extended periods of time. 

Right now, scientists are witnessing long-distance axon growth (transmission lines of the nervous system) in SCI models.  They’re studying the transplant of neural stem cells into SCI patients.  They’re even investigating ways to use technology to route signals from the brain past injury levels.

And, in April, researchers from the University of Louisville and UCLA announced the biggest news of all.  In a study that made headlines worldwide, four men who had been paralyzed for years (pictured above) shocked their own scientists when they re-gained bits of voluntary movement as a result of epidural stimulation of the spinal cord.  Each man had a stimulator surgically implanted in his spinal cord, that when turned on, mimics signals from the brain.  Movement was expected.  Electricity stimulates the cord, which stimulates the muscle.  Voluntary movement, however, was what shocked the world.   With the device turned on, all four were able to move muscles in their hips, ankles, and toes on command.

As exciting as these breakthroughs are for the SCI community, they still don’t represent a “cure”.  The four men only experience movement when the stimulation device is turned on, and that movement is minimal.   Much more research is needed, and the study resulted in more questions than answers, but it is without question the start of something exciting in the field.

But, lost in the headlines of the results, is the time, preparation, and access to therapy that the four men needed to be eligible for the procedure and for the procedure to be successful.

These are not four guys plucked out of their chairs 3 years post injury. All four had been participating in unique and aggressive wellness programs at facilities in the Christopher and Dana Reeve Foundation NeuroRecovery Network. 

DustinCrop2Dustin Shillcox is one of them.  I met Dustin shortly after his spinal cord injury, two  years before he was selected to be one of the fortunate four in the study.  Dustin and I were both injured in 2010.  Like myself, he attended Neuroworx in Utah, one of the few places in the country where aggressive, long-term therapy is accessible after injury. Dustin and I rehabbed together at Neuroworx nearly every day for the better part of 2011 and 2012.  And, we both participated in the 2012 Kentucky Derby Mini-Marathon by walking / rolling segments of the race with the Reeve Foundation.

Dustin, and the other three individuals selected, had to meet specific criteria (injury level, motor complete, time after injury, etc.) to be eligible for the study.  Once selected, they were also required to participate in 80 Locomotor Training sessions before the procedure.   Eighty sessions! Just to prepare.

After the devices were implanted in their spinal cords, therapy ramped up.  For more than a year, daily sessions lasting for hours were underway.  Different areas of their legs and core were alternately stimulated.  Voltage and intensity changed.  Controlled movement and standing was practiced.  A myriad of tests and exercises were repeated over and over again.  In time, with the stimulation turned on, movement and endurance improved.DustinLiftingLeg

When the results hit the media last spring, most spinal cord injured people had the same thought: “How do I get that implant?!”

But, in spite of what it may sound like, this study and the results were never about a “cure”.  It was, and continues to be, experimental research exploring how the nervous system works. It won’t be anytime soon, but maybe someday implanting electrodes into the spinal cord will be a part of the rehabilitation process.   That sounds promising – but there’s a glaring problem.

Remember that Dustin had to take part in 80 intense therapy sessions before the procedure, and continued daily visits after the procedure for more than a year. To put it in perspective, most SCI patients receive a grand total of 30 outpatient physical therapy visits per year  – if they’re lucky.   Therein lies the problem. 

Even if epidural stimulation, or any other neurologic breakthrough, advances to a point it becomes commonplace, a complete change in the policy of outpatient therapy needs to take effect.

Maybe advances in stem cell research will continue, and methods to safely re-grow neurons will be discovered.  Maybe technology will advance to the point signals from the brain can be routed straight to the extremities. 

Even if a magic wand made a cure available tomorrow, long-term rehabilitation programs would need to be available for there to be a benefit.

Right now those programs do not exist in most communities.   

Fortunately, a paradigm shift is coming.  There are a handful of facilities around the country that understand the need for long-term rehabilitation and wellness for individuals with neurologic injury.  

NeuroHope is creating one in Indiana. 

Not only so programs are in place for discoveries in the future, but so programs are in place for those that need it now. That’s our mission.  With your help we will get there.

Learn more about epidural stimulation, and other SCI research here.

Photo courtesy: Christopher & Dana Reeve Foundation, Esquire.com

 

 

 

 

 

 

 

 

Crowdfunding and Video now Live!

It is official!  Fundraising for NeuroHope has begun!

We unveiled our promotional video and launched our capital campaign yesterday with great results: $3,000 of our initial $125,000 was raised on Day 1.  Thanks to all who showed support right out of the gate.  Early momentum is critically important in crowdfunding. 

We have a long way to go.  Let's get this going and spread the word!  Please copy and paste the crowdfunding link in your Facebook status updates, tweets, LinkedIn feeds, and email everyone you know!

I'm extremely proud of the way the video turned out.  This was 10 months in the making.  Frazier Rehabilitation Institute in Louisville was kind enough to let us take cameras into their facility to show Locomotor Training, FES access, individual workouts and more.  Soon, we will have the same tools in Indianapolis.

A special thanks goes to Dr. Susan Harkema of the Reeve Foundation NeuroRecovery Network for taking the time to chat during our visit, and the awesome traniers and clients that were willing to be featured in the video.  Additionally, a HUGE thank-you to Invention Pictures in Indianapolis, and the outstanding post-production work of my good friends Mike Sparks and Jeremy Weinstein.

Watch the video and learn about our crowdfunding campaign below.