NeuroHope Wins $5,000 as an Impact 100 Finalist!

Impact 100 is a charitable women’s giving circle that awards high impact grants to Indianapolis nonprofits in five specialized areas: Arts & Culture, Education, Environment, Family, and Health & Wellness.

In a highly competitive selection process, one charity from each area emerges as a finalist eligible for a grand prize of $100,000.

Although we didn’t take home the top prize, NeuroHope is honored to be named the 2018 finalist in “Health & Wellness”!  At a presentation at the Ritz Charles we were awarded $5,000 to help continue our mission of affordable rehabilitation following neurologic injury!

It’s all thanks to a fantastic giving circle that is truly IMPACTING our entire community.  Learn more about Impact 100 by clicking here.

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.”