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NeuroHope at Inaugural Reeve Summit

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When Christopher Reeve became paralyzed 25 years ago, spinal cord injury was launched into the public eye.  Paralysis can happen to anyone anywhere.  There are 18,000 new injuries in the United States every year.  It is a community no one expects to join.  When we become a part of it – the fear, suffering, pain, & emotional despair is more than we think possible to bear.  But, we also discover strength, the capacity to overcome mental and physical adversity, and an appreciation and outlook on life we never knew was possible. We experience a healthcare system in need of change, a research community in need of a road map for collaboration and funding, and a paralysis community fighting for a voice for advocacy.

The Christopher and Dana Reeve Foundation has been the primary force behind advocacy for these issues ever since its creation, and it will continue to be the guiding light in the ongoing effort for both cure and care for years to come.  The inaugural Reeve Summit brought researchers, physicians, rehabilitation centers, spinal cord injury survivors, and advocates together for three days in Washington D.C. to discuss cure, care, and the future of spinal cord injury research and awareness.  Keynote addresses were made by Christopher Reeve’s daughter, and Vice-Chair of the Board of Directors Alexandra Reeve Givens, Chief Scientific Officer Ethan Pearlstein, and Good Morning America’s Robin Roberts.

While still a long way from a cure – the spinal cord injury world is at an exciting time as research and knowledge of both neurorecovery and rehabilitative interventions are advancing. It’s important for scientists and researchers to challenge each other , but also communicate and collaborate for CURE and CARE.  In the meantime, the paralysis community – people recovering from and living with paralysis need to be ready, stay healthy, and ENJOY THIS LIFE!

The healthcare system must build an infrastructure for a proper continuum of care to improve lives, and provide adequate access to interventions NOW!  That is part of the small role we are proud to play at NeuroHope.

When the injured “join” this community, we realize there are passionate voices that will not give up on advocacy for cure, care, and rehabilitative access.  Research, healthcare, quality of life, and disability rights are all connected in this world.

Many thanks to the Christopher and Dana Reeve Foundation for being the force that brings these voices together.

Epidural Stimulation Study Allows Three More Paralyzed People to Take Steps

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In September, a breakthough in epidural stimulation research made global headlines.  The New England Journal of Medicine published work from The Spinal Cord Injury Research Center at the University of Louisville, which announced that four paralyzed people regained the ability to walk after being implanted with a stimulation device and undergoing months of physical training.
Now, a new study published in Nature and Nature Neuroscience has revealed similar results in three more spinal cord injured subjects.
Epidural stimulation involves surgery that implants a set of electrodes directly on to a person’s injured spinal cord.  A power pack is also implanted underneath the person’s skin.  When the device is turned on, the spinal cord is stimulated and messages are sent to the body that bypass the injury.  (Above photo credit: The Guardian)
Dr. Susan Harkema, Director of the Christopher and Dana Reeve Foundation NeuroRecovery Network (NRN), was first behind epidural stimulation 8 years ago that restored function in multiple people with motor complete spinal cord injury.   Over the last several years her research has expanded and major milestones have been met.  First, epidural stimulation provided the ability to stand.  Then, bits of voluntary and task-specific movement were discovered.   Finally, unassisted STEPS took place.
All of these successes were performed in labs, and were combined with an incredible amount of time and repetition, but the results are fascinating, and the knowledge is still in its infancy.
NeuroHope joined the Reeve Foundation NRN earlier this year.  As a result, we are now one of a select number of sites in the world that is using what has been discovered about the unique electrical parameters in the implants, and investigating if it can be translated to Neuromuscular Electrical Stimulation (NMES) over the skin.  NMES is similar to Functional Electrical Stimulation (FES), but uses pre-programmed, task specific activities set at exclusive FDA-approved parameters that are aimed at targeting both the muscle and the circuitry of the spinal cord itself.
It is not yet known if NMES has the ability to promote neurorecovery, but we are proud to begin data collection for the NRN and thankful for the opportunity to offer it in a plan of care for our clients.

NeuroHope: Reeve Foundation Spotlight!

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NeuroHope is the newest affiliate of the Christopher and Dana Reeve Foundation NeuroRecovery Network (NRN), and has been featured as a spotlight program on their website / newsletter!  Read the original article here! 

Full text copied below:

“There is no preparation for a spinal cord injury,” says Chris Leeuw. “You wake up one morning a physically fit, able-bodied person and in the blink of an eye your life is completely transformed. When you are looking at paralysis and the potential permanence of that, that’s a situation that’s almost impossible to describe.”

Leeuw is the Founder and Executive Director of NeuroHope, the newest Christopher & Dana Reeve Foundation NeuroRecovery Network® (NRN) Community Fitness and Wellness Facility in Indianapolis, IN. In August 2010, he sustained a level C4 spinal cord injury in a swimming accident that initially left the then 28-year-old paralyzed from the neck down. Like many, Leeuw was given a poor outlook.

“After a few weeks, I began to see some signs of hope,” said Leeuw. “Early recovery in my fingers and right leg gave me the inspiration I needed to do more. My time in outpatient therapy was up and I was still mostly paralyzed. I knew that with more rehab, I had a good chance of recovery.”

In 2011, he travelled to Neuroworx in South Jordan, UT, a NRN Community Fitness and Wellness Facility at the time.

“Neuroworx understood neurological recovery and had the resources and experience to help me get my life back,” said Leeuw. “It took two years to get where I am today, walking and independent. Recovery is slow and different for everyone, but much of the journey is similar for all who are hurt.”

Although Leeuw has had a good deal of recovery, his injury is still a big part of his everyday life.

“I wanted to bring the cutting-edge interventions I’d experienced at Neuroworx back to Indianapolis,” said Leeuw. “Living with a spinal cord injury is not just about recovery, it is about long-term maintenance. Every movement is a conscious effort. These recoveries are a lot more than neurologic return, a lot of it is maintaining your body afterward.”

In 2015, he opened NeuroHope as a part-time clinic in a small University of Indianapolis gym with a therapy mat and a vision.

“Right now in traditional healthcare, people get discharged from inpatient and insurance will reimburse only for a limited number of outpatient visits. Then they go home,” said Leeuw. “These individuals need more time to maximize their recovery. They need time to learn some of the skills to deal with their new life, and in most communities, there is no place for them to go. There is a void in long-term rehab options.”

Leeuw reached out for community support. Working with the Indiana state legislature, Leeuw received a nearly $1 million grant from the Indiana Spinal Cord and Brain Research Fund which allowed NeuroHope to expand. The facility moved into a larger space, bought new equipment and now sees 50 participants a year, with a hope to double that number by 2019.

“My main goals were to create a clinic where people could come for continued, affordable care and we wanted to join the NRN,” said Leeuw. “I saw first-hand the value of the NRN interventions and I wanted badly to bring that to Indiana.”

In 2017, NeuroHope’s staff was invited to begin training to become a NRN Community Fitness and Wellness facility.

“We are thrilled to be part of the NRN. It gives us a chance to reach more people and bring that level of care to Indiana for affordable private pay rates,” said Leeuw. “Healthcare is great here but we want to go beyond that so people can continue their care. This is about providing a wellness center in addition to therapy where disabled individuals, wounded veterans, stroke survivors, brain injury survivors can go to exercise to live a long, happy and healthy life.”

Leeuw continues, “An injury changes you, changes your family, and changes your character. Every family needs more help when they leave the hospital. Our hope is to be there for them as they navigate their new path, and put them in the best position to maximize their recovery and quality of life.”

Breakthrough in SCI Research Restores Movement – NeuroHope Partners with the NRN

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An announcement at Frazier Rehabilitation Institute is sending shockwaves through the spinal cord injury community.  Andrew Meas, a 32-year old man who sustained a complete spinal cord injury in a motorcycle crash in 2006 is showing the world he can voluntarily move his legs.  It is the culmination of a 44-month long research project involving electrical stimulation and extensive therapy led by Dr. Susan Harkema, Director of the Christopher and Dana Reeve Foundation NeuroRecovery Network (NRN).

In 2018 NeuroHope of Indiana will become a proud member of the NRN, and 1 of 11 sites in the world collecting data its data.

In 2012, Meas was one of four individuals that Harkema and her team implanted with an electronic device. A stimulator was placed directly on his spinal cord that sent signals straight to his central nervous system. The researchers called it epidural stimulation, and the results made global headlines in 2014. They found that when the stimulation was turned on, VOLUNTARY movement occurred in all four individuals – a totally unexpected result.

In the three years since, Meas has been participating in aggressive rehabilitation and further research using a combination of stimulation from his implanted device and high-speed treadmill training. All of which led to the exciting announcement that after years of training, VOLUNTARY movement has occurred even with the stimulation device turned OFF!

Read the article in Newsweek here, and the official study here.

Dr. Harkema and Andrew Meas talk about the findings in the video below:

Dr. Harkema’s work is based on the physiology of the spinal cord and its capacity to “remember” and recover. She has brought her ideas to the Reeve Foundation NeuroRecovery Network (NRN), a collaboration of rehabilitation centers that focus on exploring the treatment of neurologic injury through activity-based therapies – a very specific form of task-specific interventions below the injury level.

In 2018, NeuroHope will become the 11th NRN affiliate in the world, and one of only 4 independent sites outside of a major rehabilitation hospital system. NRN sites continue to build upon Dr. Harkema’s work in electrical stimulation by exclusively incorporating Neuromuscular Electrical Stimulation (NMES) into some treatment plans. NMES is non-invasive stimulation that uses electrodes on the skin at exclusive parameters to target the central nervous system.

In the coming months NeuroHope staff will be trained directly by Dr. Harkema and her team in the activity-based interventions the NRN performs. We will be sending data to the NRN, as well as collecting outcome and patient satisfaction measures with a researchers from the University of Indianapolis.

The success of the epidural stimulation implant in Andrew Meas and the work of the NRN provides new knowledge and a new diving off point for future discoveries in treating – and someday curing – spinal cord injury. It is an exciting time for neurologic research, and we are honored to be a part of it!

NeuroHope Moving to the Incrediplex!

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It’s official! NeuroHope is moving October 1st!  Walls are being torn down, ceilings altered, and construction is underway to provide our clinic with a new home as we ramp up and expand services for 2018.

We are proud to partner with the Incrediplex, a 4-acre sports and entertainment complex in Lawrence (6002 Sunnyside Rd.) that is building our new gym attached to their existing wellness center on the east end of their “Incredible” campus.  The dream we had four years ago to open a hybrid rehabilitation / wellness clinic for people living with neurologic injury is becoming a reality this fall.  In moments like these, when the work and sacrifices made over the years come to fruition, we pinch ourselves and hope we don’t wake up!

We are also honored to have been formally invited by the Christopher and Dana Reeve Foundation NeuroRecovery Network (NRN) to join their prestigious collaboration of rehabilitation / wellness centers.  NRN sites implement state-of-the-art therapy and wellness programs tied to evidence-based practices uniquely performed and researched at the best rehabilitation centers in the world, including The Shepherd Center (Atlanta), Craig Hospital (Denver), Kessler Institute for Rehabilitation (New Jersey), and Frazier Rehabilitation Institute (Louisville).

NeuroHope will be the 12th NRN site, and the 6th independent gym in the world (not tied to a clinical hospital system) that will be participating in unique NRN programs and providing patients with affordable post-acute therapy and exercise.

We have already started to practice some of the NRN’s exclusive Neuromuscular Electrical Stimulation (NMES) sessions.  These pictures show two of our rockstar patients (Nathan and Mark) standing while hooked up to 12 channels of stimulation.  The bottom picture shows the NRN treadmill system that will be at NeuroHope after our move!

As a NRN satellite, we will be collecting data at NeuroHope and will be teaming with researchers from the University of Indianapolis to track outcome measures and program satisfaction.

(Much more on THIS exciting development soon!)

When NeuroHope opened its doors two years ago, our vision including bringing a NRN site to Indiana. It seemed far-fetched.  This fall, it too, will be a reality thanks to support from organizations like the University of Indianapolis, the OrthoIndy Foundation and our many sponsors and supporters.

We are ready!

NeuroHope at the NeuroRecovery Network Summit

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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: