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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.

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!

 

Pictures from Rehab Week London!

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Rehab Week 2017 was a smashing success!

More than 1,200 attendees from around the world gathered at the Queen Elizabeth II Conference Centre in the heart of downtown London for a series of conferences presented by the International Industry Society in Advanced Rehabilitation Technology (IISART).  The event brought together healthcare leaders, clinicians, researchers, and manufacturers to discuss the latest advances in the industry and to connect the engineers that design rehabilitative products with the providers that use them with their patients.

Booths throughout the venue displayed the world’s most cutting edge therapy resources, and talks throughout the week discussed advances in neurologic recovery, the future of robotic devices, and ideas for integrating them into comprehensive therapy programs.

NeuroHope Founder & Executive Director, Chris Leeuw hosted a panel discussion titled:  “V.I.T. – Not Only For V.I.P.: How to Make Very Intensive Therapy Effective and Affordable”, that discussed the need for greater accessibility to the state-of-the-art interventions created to help injured individuals on their road to recovery.  The expert panel featured Dr. Gery Colombo (inventor of the Lokomat and CEO of Hocoma, one of the leading manufacturers for neurorehabilitation solutions in the world), Dr. Dale Hull (Founder & Executive Director of Neuroworx, a state-of-the-art outpatient clinic in Salt Lake City), and Dr. Volker Homberg (Secretary General of the World Federation of Neurorehabilitation).

It is an exciting time in the world of neurorecovery!

Breakthroughs in research are taking place in labs around the world, and new forms of rehabilitation technology are reaching the market to help more people living with disabilities.  The goal of Rehab Week was to advance the conversation and find innovative ways to connect the industry to better serve the patients in need.

It was a fantastic week, and NeuroHope is proud to have been part of the conversation.

 

 

 

 

 

The 8th of August: Five Years Later

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Five years is a long time to live in a broken body.

It's a long time to live with the pain of a permanently dislocated shoulder, muscle fibers wound as tight as rubber bands, plummeting blood pressure, and constant exhaustion.

I'm beginning to forget what it was like to have two arms, or to take a step without needing complete concentration. It's hard to remember what textures and temperatures felt like on my skin, or what it was like to take a full breath of air, and have a properly functioning bladder.

I'm grateful for the recovery I've made, and thankful that I escaped a life of total paralysis. Five years ago, that existence seemed like a real possibility. Many people that are hurt aren't as fortunate, and I remind myself of that everyday.

Nevertheless, there are times when nostalgia hits. Sometimes it's difficult to see pictures or video of myself before the accident, and there are times I struggle with the realization that the man I once was and the life I could have had is gone forever.

Before my injury, I empathized with people who were disabled, but never thought I would one day become one of them. Those are the types of things that happen to other people. Not me. Not in the prime of my life. Bridge beam

I still remember everything about August 8, 2010. Every year all the memories of that day flood back. I remember waking up early and going to the gym, excited for the kayak trip later in the day. I remember picking up my friend Markus at his apartment on the way to southern Indiana and wrestling with his dog in the living room before we left. I remember meeting our friend Justin at the campground, the bus ride to the launch site, and what an amazing day it was on the river. I remember approaching the 50 foot truss bridge on the kayaks, and I remember climbing up the narrow beam that towered above the river – the last act of physical strength I would ever perform.

It's impossible to forget what it was like to be a total quadriplegic. Memories of being a floating head on a pillow will never fade. I'll never forget what it was like to have a machine breathe for me, a team of individuals feed, bathe, and dress me, and what it was like needing a blow-tube to communicate with nurses. I'll never forget the fear that those experiences may be a part of my everyday life for the rest of my existence.

I try not to dwell. But on the 8th of August, I allow it. This day is a reminder of my past, but also signifies what my family and I have overcome, and what we try so hard to build with NeuroHope.

I've learned that when forced to adapt to a seemingly impossible set of circumstances, no matter the context, it's up to us to find new meaning, and new purpose.

As the years go by and I travel farther away from the able-bodied person I once was, I hope my purpose becomes clear.

Embrace your abilities. Embrace your physicality. Embrace your strength and the life you live.

In one fleeting moment, it could all be taken away.

One Summer Sunday: A Sister’s Perspective

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Chris and Allison

My sister Allison has been by my side since day one after the accident 4 years ago. 

At the Rehabilitation hospital, she stayed well past the "allowed" visiting hours each night.  At the nursing home,  she kept me company, fed me, and did her best to keep my spirits up during the darkest times.  She spent hours fighting and writing hospital and insurance company administrators in an effort to grant more rehabilitation time.  She was my biggest cheerleader every step of the way as I slowly gained back my mobility and independence.  She even walked with me as I struggled through a mile at a fundraiser for the Reeve Foundation at the Kentucky Derby Marathon in 2012. 

Now, she is playing an instrumental role in helping to create NeuroHope.

Allison recently posted the update below on her facebook page.  It's both chilling and moving, and a reminder that entire families are changed by spinal cord injury – not just the person thrown into paralysis.

Essentially 4 years ago – August 8, 2010.

It was a sunny afternoon. I was enjoying a typically beautiful summer day at Lake Wawasee with close friends and family. I remember going on boat rides and trying to take kiddo’s on the jet-skis.  We were “borrowing” Chris’s two SeaDoos, and I remember calling my "little" brother to ask his advice about some issue we were having.

Carefree and oblivious.

“So Chris, what kind of oil do they take?” We spoke so briefly. Just a random chat. It's funny how the random details stick with you.

I remember our dear friends packed up early to go home and to work/school the next day. I think the first day of school that year was the upcoming Monday.  I stayed behind at the cottage. I was vacuuming, cleaning, and enjoying one last summer sunset with a plan to drive back to Indianapolis in the morning.

I didn't hear from anyone else that evening and I crashed early.  It still shatters my soul to think what was going on back home.

I woke up the next morning to strange and somber voicemails on my phone. From cousin Julie: “Allison, I heard about Chris’s accident, call me, let me know what we can do, we love you.”

That was how I heard the news.  Through all the drama of the day, a helicopter trip to the ICU and a night spent in the Emergency Room, Mom and Dad hadn’t called me. They knew I was three hours north and feared me driving back on my own. They were caught up in a nightmare.

Somethings are a blur now. We felt like zombies for months. Tears and Panic. Hope and Fear.

"Fight fight fight" , became the mantra.  I will never forget the strength of Chris’s attitude. I still try to live each day with gratitude and purpose.

Today, we have a renewed purpose.

Four years after a C4/5 spinal cord injury left him paralyzed from the neck down, we have created a public charity that will offer the extended rehabilitation services he struggled so hard to obtain.

We need your support.  We need help to spread the word.

If you haven’t already, please watch and share the inspirational video that Chris put together with help from the Christopher and Dana Reeve Foundation and his close friends.  It is too easy to take the simple things for granted in life. Mobility. Freedom. Health.

Take a moment and breathe in your life and your blessings.  Life can change in an instant and yet we all have the power to change lives.

Ask yourself, "What change will I make today?"

Visit our campaign through the link below!

 

 

Crowdfunding and Video now Live!

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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.

 

 

 

NeuroHope to Open in Fountain Square

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Happy to announce that NeuroHope will have a future home at the Sutphin Center located in the Fountain Square neighborhood!

 UIndy logo

This is an exciting development as we begin to lay the foundation for the first extended neuro-rehabilitation facility in Indiana, and we are thrilled at the opportunity to begin at the Sutphin Center for Clinical Care, which is operated by the University of Indianapolis.  This space will help facilitate a collaboration with UIndy faculty at the prestigious Krannert School of Physical Therapy.  NeuroHope will be launching a capital fundraising campaign next week to gather the resources needed to open doors and begin operation by January 2015.

This is a huge step for NeuroHope.  We now have a wellness room, a location to begin individual workouts with our Physical Therapist Nora Foster, and a place to provide access to Functional Electrical Stimulation, a standing frame, and more.  It’s a perfect jumping off point as we build our services and funding.

Official campaign details and promotional video – coming next week!

Help us open our doors! Stay tuned.

Nora Foster Becomes NeuroHope’s Director of Therapy

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When we unveiled NeuroHope last March our top priority was finding the right physical therapist.

The vision and the inspiration discussed on this website can only take us so far. The right clinician drives everything we hope to accomplish.  We knew finding that person would not be an easy task.

We needed an ambitious Doctor of Physical Therapy with experience in neurologic recovery.  Someone who has worked with spinal cord injuries and the intricacies and complications, from spasticity to blood pressure variances, that come with it.

We needed someone passionate about activity based recovery, with an understanding that aggressive exercise after injury promotes neuroplasticity and long-term health.

We needed someone that recognized the need for continued rehabilitation, and who was willing to take a chance with a start-up non-profit with a vision.

We found her!

I’m thrilled to announce Physical Therapist Nora Foster has joined us to become NeuroHope’s Director of Therapy

I have rehabbed with more therapists than I can count throughout my recovery. Some have different areas of expertise than others, and some have better skill sets than others.  There is nothing more important than a clinician’s quality of care and we are thrilled to have Nora leading the way for NeuroHope as we begin raising funds to open our doors!

You can read here bio below:

Nora shares the NeuroHope vision of creating Indiana’s first extended rehabilitative and wellness facility, and she is excited to provide future clients with the aggressive, activity based therapy and exercise they need.

Nora is a graduate of Bethel College (IN) and earned her Doctorate degree (DPT) from the Krannert School of Physical Therapy at the University of Indianapolis.

During her graduate studies, Nora became passionate about working with the neurologic population.  She began her clinical career working at an inpatient rehabilitation facility specializing in Spinal Cord Injury (SCI), and has also spent time at both skilled nursing facilities and outpatient clinics, and has attended courses in SCI, clinical education and wheelchair positioning.

She is an active member of the American Physical Therapy Association (APTA), a certified Clinical Instructor, and has helped create a SCI support group in the Indianapolis area.  Her research activities include a published study in the NeuroRehabilitation journal on community-based group exercise for persons with Parkinson’s disease.

Nora married her husband Brent in 2013. They enjoy traveling, the outdoors, and are active campers and kayakers.