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.

NeuroHope Presents at APTA National Conference

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The NeuroHope story was presented at the American Physical Therapy Association’s (APTA) Combined Sections Meeting in Denver, Colorado on February 14th!

Dr. Stephanie A. Miller from the Krannert School of Physical Therapy at The University of Indianapolis and NeuroHope’s Director of Therapy, Nora Foster presented preliminary findings of our ongoing research study at the APTA’s annual summit where thousands of physical therapists and researchers from around the globe gather to share the latest developments and practices in the physical therapy world.

It was an exciting opportunity to showcase our unique mission and program.  NeuroHope was created with a model that defies traditional healthcare.  Instead of relying solely on insurance reimbursement and billable hours – we focus on patient access and affordability above everything else.  Maximal recovery from catastrophic injuries depend on this standard of care, but adequate access to therapy, exercise, and expensive rehabilitative technology is difficult for healthcare systems to provide.  The irony: knowledge, science, and rehabilitative technology is advancing, but patient access is declining.

Most people recovering from life-changing spinal cord and brain injuries stop therapy when insurance coverage is depleted, which may only be a few months following injury.  The severity of neurologic injuries, the length of time needed to recover from them, and the lack of long-term quality of life programs in most communities leaves a void in care that NeuroHope was created to address.

Thanks to support from the Indiana Spinal Cord and Brain Injury Research Fund, NeuroHope has partnered with a research team from the University of Indianapolis to track the long-term outcome measures of patients that have access to NeuroHope’s model of ongoing care.  Since January 2018, patients attending NeuroHope have been evaluated extensively to monitor their motor fuction, physical activities and health-related quality of life during participation in our program. Patients with varying degrees of injuries, ages, and length of time since the injury, all participate in a rigorous 2-hour evaluation that consists of tests that measure neurologic function, balance, range of motion, reach, endurance, and walking,  in addition to surveys to monitor their satisfaction and quality of life.  Tests are repeated every 3 to 6 months to evaluate progress.

Patients are being tracked through the summer of 2020 in order to capture the clearest picture we can, but even now,  preliminary results have shown improvements across most outcomes.   In the coming months, we look forward to sharing complete results over a three-year period to gauge the effect that continued therapy and aggressive exercise  may have for both recent and chronically injured patients recovering from neurologic injury.

Thanks to our supporters and partners, we are making affordable rehabilitation a reality!

NeuroHope Wins $23,000 as Impact 100 Finalist

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For the second year in a row NeuroHope is proud to be named the “Health & Wellness” finalist by Impact 100 of Greater Indianapolis! This year our team was honored with a $23,000 check from the women’s giving circle which will directly help fund the services we provide for people living paralysis!

Impact 100 is one of the most competitive grants in the state. Each year five finalists in five categories advance past hundreds of other charities to be recognized as the “Change Maker of the Year” with a $100,000 grant. This year, the grand prize was presented to the Kennedy King Memorial Initiative in the “Arts & Culture” category for their effort to create a new National Monument commemorating Robert F. Kennedy’s famous speech in Indianapolis the night Dr. Martin Luther King Jr. was shot.

There are so many worthwhile charities in our community! It is an honor to be named among them by such a prestigious group that makes an impact across central Indiana each year.

Meanwhile – our fundraising continues! It’s fueled by the inspiring stories we have the privilege to witness at NeuroHope every day. If you missed our recent spotlight video that shows Alex Taylor’s progress over the last 18 months, CHECK IT OUT BELOW! He had a goal to WALK all the way to the arcade at the Incrediplex for a surprise!

We have launched a 12-MONTH goal to raise $100,000 in private fundraising (from donors like YOU) to help offset the cost of the affordable care we provide our patients. Out-of-pocket rates for physical therapy at most healthcare clinics cost $300 – $400 per hour. At NeuroHope we charge $50 to work with therapists / trainers, and rely on fundraising, grants, and corporate / community partnerships to bridge the funding gap. It is a TRUE model of care that puts patients and their families FIRST.

YOU CAN HELP NOW – Donate here!

Through the link above you can quickly make a one-time donation OR be a part of our recurring giving circle, which is a cornerstone of our grassroots campaign. At the site above, just enter your monthly contribution and CLICK the recurring button at checkout. If just 200 of our supporters pledge $25 per month ($300 per year) we are already more than halfway to our goal!

You can also be a part of one of our exciting fundraising events later this year!

MARK YOUR CALENDARS:
-“Swing Fore Hope” Golf Scramble : Monday September 24. We are signing up individual players, foursomes, and are looking for hole & event sponsors!

-Indy Monumental Marathon : Saturday November 9. Join team NeuroHope for the 5K, half-marathon, or full marathon!

Contact us us here for more information!

VIDEO: Dustin Shillcox Explains Epidural Stimulation that Restores Movement after SCI

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In 2013, Dustin Shillcox became 1 of the first 4 people in the world to be a part of groundbreaking epidural stimulation research at the University of Louisville.  A set of electrodes was surgically implanted onto his spinal cord below the level of his injury and a small power pack was implanted into his abdomen.  When the pack is turned on, an electric current is sent to the electrodes, which stimulates his spinal cord into action.

To help them better understand the circuitry of the spinal cord, researchers hoped the stimulation would translate to activity through the nervous system.   Incredibly, for Dustin and the three other spinal cord injured patients in the study, the results went well beyond what researchers imagined.  In all four patients, bits of voluntary movement were restored, sending shockwaves (no pun intended) through the spinal cord injury community.

Building on the developments over the last several years, epidural stimulation research has expanded and major milestones have been met.  The most recent study published earlier this year in Nature and Nature Neuroscience announced unassisted steps took place following the procedure for the first time.  These findings have dominated the conversations of people living with spinal cord injuries who yearn for the ability to walk again with stimulators of their own.

Epidural stimulation is still in its infancy, and in any event, its benefits are about much more than walking.  It’s also about addressing the secondary complications of spinal cord injury, such as blood pressure issues and skin breakdown, and about staying healthy after injury.   And, it involves months of preparation, rehabilitation, and a lifetime of maintenance.

Dustin visited NeuroHope recently to talk about the research, what it means to have the stimulator (which he uses every day), and what it is like to be one of a select few people in the world to have the device embedded into his nervous system.  Watch the video below:

I met Dustin in 2011, shortly after his spinal cord injury, and two years before he was selected to be one of the fortunate four in the 2013 study.  We were both injured in 2010, and we rehabbed together at Neuroworx  in Utah for the better part of 2011 and 2012.

As he mentions in the video above, Dustin and the three participants in the original study had to meet specific criteria to be eligible.  Once selected, they were required to participate in 80 Locomotor Training sessions (stepping over a body-weight-support treadmill) before the procedure.   Eighty sessions! Just to prepare.

After the devices were implanted, 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

But, in spite of what it may sound like, the 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 participate 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 enough to have a good insurance plan.

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

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

Right now those programs do not exist in most communities.  Hopefully, a paradigm shift is beginning.  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 has created one in Indiana. Not only so programs are in place for discoveries in the future, but so programs are in place for those who need it now.

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

Vote NeuroHope for Indianapolis Colts Cheerleader’s $10,000 Community Challenge!

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The Indianapolis Colts Cheerleaders have launched a “Community Impact Challenge” and NeuroHope needs YOUR VOTE to win a $10,000 grant!

Each member of the Colts cheer squad has picked a charity and a program to support.  NeuroHope is honored to have been selected by Vanessa Wahl, a Greenwood native in her second year with team, who shares our passion to provide affordable rehab for people living with and recovering from paralysis.

Vanessa’s campaign will help NeuroHope fund a re-vamped wellness program and will be a MAJOR boost to our services!  $10,000 comes down to your VOTES! Just a moment of your time can help change lives at NeuroHope.

Click here to vote! Scroll to the very bottom of the page and select “Vanessa – NeuroHope”, and spread the word!

Vote EARLY AND OFTEN! Polls close on December 16, 2018.  The winning project will be announced at the Indianapolis Colts vs New York Giants game on December 23!

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.

“Swing Fore Hope” Scramble Raises $15,000!

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It was an AWESOME afternoon at NeuroHope’s  inaugural “Swing Fore Hope” charity golf scramble!  The rain and thunderstorms held off (somehow), and we had a great turnout.  30 Teams! 26 sponsors!  Thank you to all who spent the afternoon with us at The Fort Golf Resort.

A special thanks goes to Hensley Legal Group PC for helping to organize the festivities, Delta Faucet, who featured a faucet and shower head give-away, Andy Mohr Buick GMC, and our headlining sponsors The Incrediplex and Valeo Financial.

Shout out to our generous hole sponsors as well: Goodman Campbell Brain & Spine, Systemax Corporation, Leeuw Oberlies & Campbell PC, Langdon Shaw Associates, Scopelitis Garvin Light Hanson & Feary PC, hc1.com, Heidi Orth, Indie Asset Partners LLC, BATS Wireless, Bright Ideas in Broadripple, Kareo, Restorative Therapies Inc., Community Rehabilitation Hospital, ClaimAid, The National Bank of Indianapolis, Sparenberg Farms, Lannie Thompson: FC Tucker, Rehabilitation Associates of Indiana, Circle City Reporting, Mirazon, Jordan Lemons Construction, National Seating and Mobility, Sunrise Medical, David Bruce: State Farm, NuStep.

We had a fantastic time with a “Longest Drive”, “Closest-to-the-pin”, and “Tournament Champion”, along with raffles and an autographed racing suit courtesy of IndyCar driver Marco Andretti!  Together, we raised $15,000! Not to shabby for our first ever outing.

 


 

Chris Leeuw Awarded “Rosenbaum Friend of Physical Therapy” from INAPTA

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NeuroHope Founder and Executive Director Chris Leeuw was presented with the 2018 “William T. Rosenbaum Friend of Physical Therapy” award by the Indiana chapter of the American Physical Therapy Association (APTA) at Bellarmine University in Louisville, KY on September 22.

From the INAPTA: “The award is presented to honor and recognize the accomplishments of those persons outside our profession who, through their dedicated assistance and support, have promoted our ideals and improved our profession.”

Leeuw was nominated and presented with the award by Donna Peterson, who was recognized as the Schneider PTA of the Year in 2017.  Peterson was Leeuw’s primary therapist during his two month inpatient rehabilitation following his 2010 spinal cord injury.  Five years later, she joined NeuroHope when Leeuw and physical therapist Nora Foster first launched the clinic to provide long-term, affordable therapy for neurologic injuries.

Peterson’s remarks:

“Chris Leeuw’s life changed in an instant when a little over 8 years ago, a perfect late summer day and adventure left him paralyzed from the neck down as a result of a C4-C5 SCI. I had the fortunate pleasure of meeting Chris during the early days of this journey as one of his first physical therapists in acute rehabilitation.  I knew then that Chris, along with his family, had a special drive that the injury and the status quo of the health care system would not contain.

 Fortunately for Chris, he demonstrated early signs that his injury was incomplete and his potential for recovery was great. What he was lacking was time, as insurance was pushing for discharge from acute rehab and the intensive therapy that his injury indicated.  Chris and his family, not taking “no” or “that’s how the system works”, as an answer fought for an alternative and found a program in Utah that offered affordable, long term rehabilitation options. Chris thrived in this environment and was able to make huge strides in his recovery. Upon his return to Indiana, Chris vowed to make a difference and began his quest to develop and provide a similar option in Indiana and change the paradigm of rehabilitation and wellness for individuals affected by and living with paralysis in Indiana.  

That’s how NeruoHope was born. In the months and years that followed, Chris worked tirelessly to fund and open NeuroHope in February 2015, a non-profit outpatient clinic with a mission to provide affordable, activity-based therapy to people living with and recovering from neurologic injury.

In the last few years, not only has Chris opened NeuroHope, but he has been instrumental in changing legislation that allows funding for long term rehabilitation and wellness, promoted awareness of the needs of those with neurological injuries, been a mentor, inspiration and friend to patients and supporters of Neurohope, facilitated the strategic affiliation with the Christopher & Dana Reeve Foundation NeuroRecovery Network as a one of only 7 Community Fitness and Wellness Centers in the U.S.,  and lead multiple fundraising efforts which have allowed Neurohope to expand to offset the costs in providing services to countless individuals.  On top of that, his most outstanding achievement was hiring me. 

In all seriousness, I have been honored to have the unique opportunity to watch Chris battle his personal physical challenges with SCI, but take an idea and turn it into reality that benefits countless individuals.   I knew early on, that Chris would always look for a new road, a new way, and never stop striving to be the best version of himself.  Chris, through his relentless pursuit of his vision, has provided others with the opportunity to become the best version of themselves and allow them every possible chance for maximum recovery and the best quality of life possible.

I am honored to present Chris Leeuw, my former patient, current boss and long-time friend with the 2018 Bill Rosenbaum Friend of PT Award.”

Client Spotlight: Ryan Bardellini

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Less than one year ago, Ryan Bardellini was enjoying his senior year at the International School of Indiana. A standout fencer and student, Ryan’s future plans involved looking at colleges and planning his future. Ryan’s life changed in November of 2017. He was involved in a serious accident and sustained a traumatic brain injury. Ryan was in the hospital for three months, and at an inpatient rehabilitation facility for a few weeks. After his insurance coverage ran out, however, Ryan was discharged, and his recovery slowed.

“He went from having intensive therapy five days a week to being limited to 2 or 3 weekly visits,” says Ryan’s mother Kimberly. “He wasn’t ready to be discharged [from daily therapy], he needed much more.”

Through their own research for resources available to people with brain or spinal cord injuries, the Bardellini’s found NeuroHope to supplement the outpatient visits he was receiving at the Rehabilitation Hospital of Indiana (RHI).

Ryan began coming to NeuroHope on days he did not have sessions at RHI so he could receive the most therapy and exercise he could during the critical first year after his injury. In March of 2018, Ryan was still significantly paralyzed on his right side and was just re-learning to take small steps with a walker. NeuroHope’s therapists and trainers have paid particular attention to his weaknesses and fragile gait pattern over the last 6 months, and have pushed him through vibration plate balancing, electrical stimulation, treadmill training, and core exercises.

By May of 2018, Ryan had gained significant return on his right side and had become strong enough to walk on his own across the stage at his high school graduation. Ryan’s journey, attitude, and hard work have been nothing short of inspiring. He has come far in his life-changing journey, but he is not finished yet. Today, he continues to work with NeuroHope’s trainers, who push him to continue to improve his balance, coordination, and overall strength. And college plans are right around the corner! He’s been accepted to Purdue University and is taking his first class this semester with an eye on returning as a full-time student soon.

As an accomplished fencer – his next goal is get back back on the strip!

 

“Swing Fore Hope” Golf Scramble – September 24th!

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Mark your calendars for Monday, September 24!

We are thrilled to announce our 1st Annual “Swing Fore Hope” Golf Scramble to benefit NeuroHope, sponsored by Hensley Legal Group, PC. The action starts at noon at The Fort Golf Resort at Fort Harrison State Park!

Enjoy an end-of-summer Monday hitting the links, enjoy a free lunch, and take a run at some prizes – all to benefit NeuroHope!  Scramble rules apply, which means each team plays their best stroke every shot.  No matter your golfing skills, you are guaranteed a good time!

– Individual player: $65
– Foursome: $250

We are seeking event and individual hole sponsors!  For sponsorship opportunities click here, and contact Ryan Kreicker at: [email protected]

Learn more about the outing and register online by clicking here!

Or, download an entry form and mail in your registration by clicking here!

Can’t make it, but would LOVE to show your support?! Donate here!