NeuroHope’s Speech at Indiana Spinal Cord and Brain Injury Research Conference

NeuroHope Executive Director Chris Leeuw was one of seven speakers at the 2018 Indiana Traumatic Spinal Cord and Brain Injury Research Conference, held April 18th at the IU Health Neuroscience Center in downtown Indianapolis.

The annual conference is sponsored by the Indiana Department of Health to showcase projects that have been made possible thanks to support from the Indiana Spinal Cord and Brain Injury Research Fund.

Leeuw’s talk focused on NeuroHope’s expansion and the mission to provide affordable, activity-based therapy to people living with and recovering from neurologic injury.  He also discussed NeuroHope’s recent invitation to join the Christopher and Dana Reeve Foundation NeuroRecovery Network (NRN), and the research that is collected at NRN sites across the U.S.

Full transcription of the presentation:

“Good afternoon!   My name is Chris Leeuw, Director of NeuroHope.   Nora Foster, NeuroHope’s Director of Therapy, is here with us also.

We are honored and thankful to share the NeuroHope story with everyone. This presentation will be different than others today, because the support we received from the Spinal Cord and Brain Injury Research Fund was not STRICTLY to fund research. Data collection is a part of what we do, but the primary purpose of the two-year grant we received has been to help our charity NeuroHope expand its very specific mission: to make long-term therapy and exercise programs available for people recovering from traumatic injury after insurance expires, and to do so in a way that is affordable and accessible for the patients that need it.

Nora and I opened NeuroHope 3 years ago in a part-time gym with the help of the University of Indianapolis Krannert School of Physical Therapy.  We understood first-hand that it takes a long time to recover from most neurologic injuries.   And, we understood that since healthcare is dictated by insurance reimbursement, patients are discharged from inpatient rehab too soon.  Sometimes, discharge is within a matter of weeks, after which, patients are given a limited amount of outpatient PT/OT visits to continue their recovery, which is simply not enough. It is not enough time.  It is not enough access.

I lived through the process as a patient.  In 2010 I suffered an incomplete C4 spinal cord injury that initially left me a total quadriplegic, paralyzed from the neck down. I’m standing here today because my injury turned out to be less severe than many.  I was very fortunate in my recovery.  But, even in my situation it to took two years of daily, aggressive therapy to maximize my recovery.  I was at the Rehabilitation Hospital of Indiana for my inpatient stay, where I had outstanding care.  I did not want to leave. I stayed there for 8 weeks, which is much LONGER than most patients, because I was showing slow signs of progress.  But, when my time there expired I was still was mostly paralyzed, and I had to leave continue my rehab out of state.

Nora has lived through the process as a clinician through her work in the Community Health network, which is another great organization.  But, Nora also realized that there is a significant void in the continuum of care after discharge, and it all relates to cost.

Within the first year of a spinal cord injury (SCI), medical costs can approach 1 million dollars.   Healthcare costs continue to rise, and as a result, inpatient days have become more limited.   In the 1970’s the average stay following SCI was 98 days.  Today, that number has shrunk to just 35 days.

In year two, and every year after, medical costs may reach $100,000 per year.  One in four discharged patients are admitted back into the healthcare system because they sit at home and secondary complications that come hand-in-hand with neurologic injury (pressure sores, contracture, bone-density, etc.) kick in.   Outpatient therapy allowances are shrinking as well.  Insurance companies allow an average of 21.5 visits per year for outpatient physical and occupational therapy.  So, we’re faced with a great irony. At a time when rehabilitative advances are happening faster and faster, adequate access to the best resources is more difficult to come by.

At NeuroHope, we have a different, 4-stage vision.

We do everything we can to complete the continuum of care.  After a patient is discharged, instead of a two-stage process, we add a third stage.   By providing care at affordable, private-pay-rates, the third stage involves a comprehensive approach to extended rehabilitation so patients can maximize their recovery in the critical first two years after injury.   Then we add a 4th stage for chronic injuries that can blend personal training and wellness programs to help patients maintain a healthy quality of life.

The support we’ve received from the ISCBIR Fund has enabled us to do this.  The video below shows how we’ve grown since our October expansion:

This has been our goal.   Thanks to support from the ISCBIR Fund, we have been able to increase staff, move to a new gym in the Incrediplex, and increase hours.  Most importantly, we have been able to tap into our waitlist and help more people living with paralysis. We are currently seeing about 50 clients, with varying diagnosis, the majority being SCI, TBI.

The expansion has also secured an invitation from the Christopher and Dana Reeve Foundation to join their NeuroRecovery Network (NRN).  The NRN is a network of sites that share a similar vision centered around activity-based therapy (ABT).  ABT specifically focuses on weaknesses and activating the neuromuscular system below the injury level.

NRN sites collaborate with each other and collect data. Most NRN sites are clinical sites tied to leading rehabilitation hospitals.  Other NRN sites, including NeuroHope, are focused more on community fitness and wellness – with an emphasis on making activity-based therapy more widely available in more of a gym setting.

Some of the research collected exclusively at NRN sites involves Neuromuscular Electrical Stimulation (NMES).  This looks like normal Electrical Stimulation (E-stim) or FES, but it is much different. NMES is centered around the success of epidural stimulation research.  NMES uses different parameters than typical E-stim.  The main differences are higher pulse width and frequency, and longer amplitude. NMES tries to trigger beyond the muscle into the nervous system.

We’re proud to be a part of the NRN, although it is a very small part of what we do.

Our primary focus centers on the basic mission of getting people active, out of their chairs, and promoting as much recovery and wellness as possible to improve long-term quality of life.   Over the next two years, NeuroHope staff will be working with researchers from the University of Indianapolis to track patient outcome measures, and patient satisfaction.  We have also developed a logic model to help track the overall goals of our program.

This strategic plan is important, because our program must remain sustainable.  A substantial part of what we do relies on fundraising to help offset the true cost of the care we provide.   It’s critical for us to work with providers and healthcare leaders to help complete this continuum of care. And, it’s our hope we can be back a year from now and share our continued success.

Thank you very much.”

NeuroHope: 2018 Brackets For Good Champions!

WE DID IT!! Each one of YOU made NeuroHope the 2018 BRACKETS FOR GOOD CHAMPIONS!!  We are still in awe at the support that flooded in for our cause throughout this MONTH LONG tournament.  Round by round, you carried us past 63 other fantastic charities to the very end. In total, we raised $80,088 AND took home the $10,000 grand prize.  SIMPLY STUNNING!

As one of the smaller charities in the tournament, we were seeded in the “Least Resources / Least Awareness” division.  This meant we were seeded low and faced some difficult competition.  But, THANKS TO YOU, we wore our Cinderella slipper well.  The final round was edge-of-your seat entertainment.  A NeuroHope  “war room” was set up at the Incrediplex As the donations poured in throughout the closing seconds, the LAST PLAY put us over the top for a thrilling $42,339 – $40,207 final round victory.  CHECK OUT THE VIDEO OF THE CLOSING SECONDS BELOW!

Throughout this campaign we totaled:

  • 716 donations
  • 123 First time donors
  • A grand total of $90,088

We are proud and humbled that our mission to provide affordable, extended rehabilitation for neurologic injury is striking a chord in our community and we have all of you to thank.

A special shout-out is dedicated to our corporate teammates at Incrediplex and Hensley Legal Group, who helped make this improbable championship run a reality!

What a month. THANK YOU ALL!

NeuroHope: Reeve Foundation Spotlight!

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.”

Open House Thanks! and ‘Brackets For Good’ Tip-off!

The NeuroHope Team would like to extend a heartfelt THANK YOU to everyone who made it to our Open House on Friday night! The outpouring of support was more than we imagined. Nearly 300 of you toured our gym and packed the Incrediplex auditorium to hear our story, learn about our services, and be inspired by our clients – and 1,300 MORE of you tuned into our feed on Facebook Live.

You recognize the impact we are having on the lives of our clients and you are rallying around us!

At the Open House we shared our journey, and explained our expansion to a new gym thanks to support from the Indiana Spinal Cord and Brain Injury Research Fund from the State Department of Health.  This has allowed us to begin a research project with the University of Indianapolis Krannert School of Physical Therapy, and join the prestigious Christopher and Dana Reeve Foundation NeuroRecovery Network as 1 of 11 worldwide affiliates that collaborate and provide innovative treatment and extended physical therapy and wellness after neurologic injury!

While this expansion has enabled us to grow – our mission continues to be focused on providing affordable care for those that need it.  That means community support is the foundation of our services!

How You Can Help:

We are giving Brackets For Good another run this year!  And we need YOUR help in the FUNDRAISING starting this Friday, March 2!

Brackets For Good is a weekly “competition” between charities to raise funds each week, with a chance to advance through the bracket (think college basketball’s March Madness) to a $10,000 grand prize (in addition to keeping all funds raised).  Last year we raised $54,000 and made a run to the tournament Final Four!  View this year’s bracket here!   Let’s win it this year – and secure funds for our new gym!!

Donations can be made online as soon as the tournament starts, and you can watch the scores update REAL-TIME.  Stay tuned to our newsletters, and follow us on Facebook for updates!  We will let you know when the giving begins!

NeuroHope Open House: Friday, February 23!

Save the date!! The NeuroHope Open House is Friday February 23rd at our NEW GYM inside the Incrediplex! Come see the growth our supporters have been a part of since 2014, learn how we are changing rehabilitation from neurologic injury in Indiana, and hear from our patients!

Come hungry! Free food from 5:30 – 8:00, and don’t miss remarks at 7:00!

Over the last 12 months, NeuroHope has expanded to a new gym, added passionate staff, received support from the Indiana Spinal Cord and Brain Injury Research Fund from the State Department of Health, began a research project with the University of Indianapolis Krannert School of Physical Therapy, and joined the prestigious Christopher and Dana Reeve Foundation NeuroRecovery Network as 1 of 11 worldwide affiliates that collaborate and provide innovative treatment and extended physical therapy and wellness after neurologic injury!

Most importantly, in 2017 we helped 49 clients along their road to recovery!  It has been a thrilling year, and we would love to celebrate with you!

     

 

 

 

  • 5:30 – Doors open at the Incrediplex event center, food and drinks available, NeuroHope gym open to visit.
  • 7:00 – Remarks from NeuroHope staff and patients
  • 7:30-8:00 – NeuroHope gym open to visit

Parking at the main entrance of the Incrediplex:
6002 Sunnyside Rd.
Indianapolis, IN 46236

See you there!

Welcome To Our New Home at the Incrediplex!

It has been a busy fall of packing and renovating – but our relocation is complete and we are thrilled to be seeing clients at our new gym at 6002 Sunnyside Rd. We are proud to have fostered a partnership with the Incrediplex at their sports and entertainment complex. Their team did a tremendous job with construction.

 

 

 

 

 

 

 

 

 

 

 

 

The new space features a front desk / waiting zone, two large therapy areas, therapy offices, FES station, gym space for our wheelchair gym, NuSteps, cable machine and SCIFit Arm/leg cycle, a PowerPlate for vibration training, adaptable Total Gym, and more.  Additionally, there is an area cut specifically for our gait training treadmill system when it arrives later this year and we become an affiliate of the Christopher and Dana Reeve Foundation NeuroRecovery Network.

 

 

 

 

 


 

 

 

 

 

We are now open 5 days per week, and are excited to ramp up scheduling as we begin a research program with the University of Indianapolis in the coming months!

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

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!

Team NeuroHope at 2017 Monumental Marathon!

For the third consecutive year, Team NeuroHope ROCKED OUT the Indianapolis Monumental Marathon and raised more than $7,000 in the process! NeuroHope Board Treasurer Allison Leeuw quarterbacked our team of 20+ runners, joggers and walkers (with an assist from Events Coordinator Justin Davis) to make our third year the largest yet!

 

 

 

 

 

 

 

 

 

 

 

 

 

A heartfelt and resounding THANK YOU goes to our entire team, and each and every one of the donors that pledged support to their individual efforts, and a special shout-out goes to the teams at Hensley Legal Group who came out in full force as race participants and volunteers with the Monumental organizers!

 

 

 

 

 

 


 

 

 

 

 

 

 

 

Donna Peterson Named Indiana PTA of the Year

NeuroHope’s own Donna Peterson was honored this weekend by the Indiana Chapter of the American Physical Therapy Association as the winner of the 2017 Schneider Physical Therapist Assistant Award!

The annual award is presented to an outstanding Physical Therapist Assistant (PTA) in Indiana, and we are thrilled for Donna and her family for such well-deserved recognition.

Donna has established herself as one of the most knowledgeable and trusted neuro PTAs in our community. As one of the first employees of the Rehabilitation Hospital of Indiana, as a teacher at the University of Indianapolis, and as a founding member of NeuroHope, her expertise of the field is second to none.

Donna was the first therapist I had upon my admission to inpatient rehabilitation following my spinal cord injury in 2010.  She worked with me for two straight months.  She pushed me, encouraged me, and educated me during the most trying time of my life.  The passion Donna shows for her work and for each one of her patients is evident.  I was lucky to have her as my therapist then, and I’m lucky to have her as an integral part of NeuroHope now, seven years later.

On behalf of all the patients, students, co-workers and friends whose lives she has touched throughout her career – we say: CONGRATULATIONS DONNA!!

   

Reynolds American “Day of Caring” at NeuroHope

Last month, I received a phone call from Isaac Keplinger, a senior division manager at Reynolds American Inc.  He told me that he heard about NeuroHope, looked us up, and was in awe of what we were creating for Indianapolis.

Isaac has lived through neurologic injury.   He has traveled the difficult road to recovery following traumatic brain injury, and has learned first-hand that options for continued care are limited.

He told me that NeuroHope’s mission affected him deeply – and he wanted to help!

Isaac’s team at Reynolds American chose to support NeuroHope for their annual “Day of Caring”, an outreach project to give back to local causes through a day of volunteer work.  With our move to the Incrediplex gym around the corner – the timing was perfect!  Their team arrived on-site first thing in the morning, and broke ground on the future site of the “NeuroHope Garden” in front of our new gym.

Brush was cleared, weeds were pulled, stumps were removed, branches and bushes were trimmed.  They worked through the rain, they worked through lunch, and the end result was spectacular!

Isaac had this to say about the afternoon:

“Our day spent giving back to NeuroHope was nothing short of amazing!  I am fortunate to work for an organization that allows their employees to donate time supporting local organizations of our choice that we are passionate about. For my team’s “Day of Caring” we decided to support NeuroHope of Indiana based on their passion to drive change within the healthcare arena and help the far too many underserved individuals that are subjected to a multitude of constraints in today’s healthcare and insurance marketplace. Unfortunately, in today’s world, organizations like NeuroHope are rarities. They continually sacrifice so much, to focus their passion and talents to serve others; delivering hope in the process.  Chris and everyone at NeuroHope are trailblazers that continue to effect change”.

I can’t thank Isaac and his team enough for reaching out and spending their day to help prepare our new home at the Incrediplex.

IT WAS A JOB WELL DONE!!