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.
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.
Many thanks to the Christopher and Dana Reeve Foundation for being the force that brings these voices together.
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.”
“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).
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 
As an accomplished fencer – his next goal is get back back on the strip!
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.
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.
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. 
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.
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?”
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