NeuroHope Opens Its Doors!

(NEUROHOPE) It has been an exciting week, and I'm happy to announce that NeuroHope has officially opened doors at the University of Indianapolis Sutphin Center in Fountain Square!  Nora Foster (DPT) welcomed her first clients, Tamika, Randy, and Aiden to the clinic.  They braved the snow to make it, and we were thrilled to have them!

image1Aiden&NoraThis is a special moment for us all.  It is the culmination of two years of hard work and determination for our vision to become a reality.  We are a long way from the summit, but this step is evidence that we will be successful in reaching our goal.  The need for long-term rehabilitation is real.  Hospitals and outpatient programs may be restricted in the care they are able to provide, but we are building a truly unique program that operates outside of the boundaries of traditional care. We are on to something BIG and we have many of you to thank!  Your financial support has carried us to this point and helped secure some of the equipment pieces we needed to begin operation.  It hasn't taken long to see results.

Our client Randy was able to access the standing frame on Friday, placing him upright for the first time in three years.  THAT is a special moment.

RandyEasyStandTamekaNuStepA special thanks also goes to the UIndy Krannert School of Physical Therapy and the Sutphin Center for Clinical Care.  The home they have provided in the Southeast Community Services building is perfectly situated for our needs.  Without their generosity none of this would be possible.

We have hit the ground running, and for now, are open Mondays, Wednesdays, and Fridays.   In March we will be able to accept most insurance policies for client visits, which will enable more aggressive scheduling.  

Your continued support is critical in our early stages.

Learn how you can help with our initial expenses by visiting our donate page. Click here!

Thank you, and stay tuned for an exciting year!

 

 

 

 

 

 

 

 

 

 

NeuroHope Bill to Fund Recovery Programs Passes Senate

 

In the months since our campaign for NeuroHope was launched, we've been turning heads locally about the need to address long-term treatment and wellness programs for people recovering from and living with traumatic injury in Indiana. I've shared our vision with healthcare executives, insurance leaders, politicians, and media outlets in an effort to help change the paradigm of neurologic recovery in the state.

miller chairOne of the individuals who has taken our story to heart is Senator Pat Miller (R-Indianapolis), who also chairs the bipartisan Senate Health and Service Providers Committee. We've been working closely with Senator Miller in an effort to amend a law, that if successful, can help fund specialized programs that offer long-term, activity-based therapy and wellness services. Indiana has a fantastic law already in place that helps fund neurologic resesarch. This amendment would let specialized programs be eligible to apply for grants from the exisiting fund as well.chris5

On Wednesday, I testified before the committee at the Indiana State Capitol. I shared my story, explained the void in care, and described how this bill has the potential to enhance the research it already funds and change the lives of those living with paralysis in the process.

IMG_2085The bill passed committee 11-0, and now will move to the Senate floor. First hurdle cleared!

UPDATE: On January 29th, the bill passed the Indiana Senate a resounding 47-0!  A clean bipartisan sweep!  This brings us halfway home.  In March, it will move to a committe for approval to send to the House of Representatives.

My testimony is posted below. The first half tells my personal recovery story, the second half explains the the potential of the bill.

Four and a half years ago I broke my neck in an accident and suffered a spinal cord injury that left me completely paralyzed from the neck down.  It may come as a surprise as you see me walk into this room, but after my accident doctors weren’t sure if I would ever re-gain any movement.  They prepared my family and me for the scenario that I might be a total quadriplegic for the rest of my life.

Initially (as I was going into surgery and trying to process that I was paralyzed) the only glimmer of comfort that I had, was knowing that I would receive the best standard of care.  Between Methodist, IU-Health, the Rehabilitation Hospital of Indiana, and other hospitals, there are many fine facilities here in Indianapolis.  But, it soon became apparent that in spite of the care these facilities provide in the early stages of traumatic injury, there is a HUGE void they are unable to fill AFTER discharge, which often comes after a matter of weeks.  Insurance runs out quickly, no matter how great the plan.

I was discharged from the Rehabilitation Hospital of Indiana after 8 weeks.  I fought for and received two extra weeks due to the severity of my injury, and the early progress I was showing.   But, at discharge I was still completely paralyzed except for small movements in my fingers and right foot, and I left the hospital on a stretcher.  Many bodily-functions were not intact.  I didn’t have the ability to feed or bath myself.  I was still completely caregiver dependent.   Leaving the rehab hospital meant the daily physical and occupational therapy I had been receiving, and desperately needed to continue, had to stop.   I remember that being the single most devastating blow for me.  Incredibly, insurance would pay for a $50,000 blow-powered wheelchair, but extended therapy was denied.  All I could do was return for a limited number of outpatient therapy visits a few times per week, a total of 30, before they too expired.  I went to a nursing home instead.

My situation is not unique.  This is the way it is for everyone recovering from traumatic injury.  Neurologic injury takes months and sometimes years of intense rehabilitation to maximize recovery and a lifetime of maintenance.

Six months after my accident – still wheelchair bound – I was fortunate to travel to a specialty outpatient clinic in Utah formed precisely to help fill this need.   This facility not only provided long-term access to rehabilitation, but also had specialized resources and equipment for neurologic recovery that was not offered anywhere in Indiana.  My mother (who was my caregiver) and I were able to stay in a small apartment in Salt Lake City for nearly 2 years.  I spent 3 to 4 hours in rehab everyday, until I recovered to the point where I am today.  

Everyone will not be as fortunate in recovery as I was. Every spinal cord or brain injury is different.  But, everyone needs continued care after inpatient and outpatient visits expire.

Now, I’ve organized NeuroHope of Indiana, a 501 © 3 public charity dedicated to bring this patient-centric standard of care to Indiana, and to help put more injured individuals on a path toward recovery, independence, and a return to the workforce.

Senator Miller’s bill speaks to a very good law already in place in Indiana, and has the potential to greatly ENHANCE the research that it already funds. 

The current law regulates the Indiana Spinal Cord and Brain Injury Research Fund that was established in 2007.  This fund is a godsend.  The fact that our state recognizes the importance of addressing traumatic injury puts Indiana ahead of many others in a changing paradigm of neurologic research and recovery.

The fund receives about 1.5 million dollars per year from vehicle registrations.  Under the current law, this money can only be used for research purposes. Last year 9 researchers received grants for various projects, and this incredible work needs to continue.  Unused money in the fund rolls over to the next year. There is currently more than 4.5 million dollars available in the fund.  Senator Miller’s bill will continue to fund research programs.  However, it will also allow the board that administers the fund to consider grants for specialized long-term therapy PROGRAMS. 

These programs will INCREASE clinical research opportunities by potentially providing an ENVIRONMENT for research to take place, while treating patients in the process.  A sandbox can be created for educators, students and researchers.

The current 9-member board has been an outstanding steward of the fund.  They are experienced and well qualified to evaluate the grant applications to ensure that good stewardship continues.  The language in this bill helps ensure that only specialized programs would be eligible for application.

It’s an exciting time in neurologic research.  The last 12 months have seen breakthroughs in laboratories and therapy gyms around the world, and medical organizations are aggressively seeking funds to continue research that they hope may bring them closer to a cure.   Directly linked to that research is the need for an incredible amount of rehabilitative therapy that in the current health care system is difficult to receive.

The packets you have been provided show a model of this changing paradigm in neurologic recovery.  Today’s current model consists of only two stages: Inpatient stay followed by limited outpatient visits.  That’s it. 

The continuum of care should involve a 4-stage process.  We need a 3rd stage of extended rehabilitation and activity-based therapy that focuses on re-educating the nervous system, and we need a 4th stage of long-term health and wellness that is critically important for those of us living with disabilities.  This is an element that is just as important as the recovery stage, and cannot be overlooked.  Individuals less fortunate in their recovery need wellness programs in place to maintain their bodies and all the complications that come hand-in-hand with paralysis.  They need to prevent pressure sores, maintain muscle and bone integrity, and more, to promote their quality of life and keep them out of the health care system.  Programs like this are working in other communities – I’ve toured and met with the leaders of 7 of them – and they will work here as well.

Also in the packet, you will find the most recent report of the Indiana SCI and Brain Injury Fund and a description of the program.

Finally, the packet includes a report from the Utah Department of Health that shows the potential positive impact of this bill.  The state of Utah has set up a similar fund for therapy and treatment and has had great success in returning individuals to work and school, and improving their overall quality of life.   Some of the grants went to the unique facility that I attended, and to which I owe so much of my recovery.

The future of neurologic recovery relies on innovate research AND long-term programs for individuals outside the boundaries of traditional care.   This bill will put the board in position to address both.

 

 

Small-Town Company Making Global Impact for Paralysis Community

 One hundred miles southwest of the bustling suburbs of the Twin cities is the town of Morton, Minnesota. 

A 2-hour drive down a series of two-lane highways through a mix of farmland, tundra, and open space, takes you to the tiny burg of less than 500 people.  Morton boasts just a handful of intersections and corner stores, but a block off Main Street, in a gravel driveway at the foot of a small hill, sits a modest size building with aluminum siding.  It’s the headquarters of Altimate Medical Inc., which does business under the more familiar name EasyStand.

Nestled alongside a grain elevator and a seemingly abandoned railroad track, it’s not exactly the kind of place you expect to find a company making a global impact in the medical field.  But, inside, EasyStand’s team of 40 employees design, develop, manufacture, and ship state-of-the-art standing frames to medical facilities and to people living with paralysis around the world. “I don’t think many people in this area even know what we do here,” said Kyle Smith, EasyStand Marketing Manager.  “I’m from the area and didn’t fully realize the impact we had until I started working here.”
 
frameinofficeEvery day 30-40 EasyStand standing frames are built from scratch, assembled, tested, disassembled and shipped from Morton to rehabilitation hospitals, physical therapy clinics, skilled nursing centers, and individual buyers around the world.  Not bad for a small-town company started in the 1980s by Alan Tholkes, a C6-7 quadriplegic. Tholkes began tinkering with contraptions in a garage in order to create a device that could help him spend time out of his wheelchair.
 
“Many people don’t understand the toll that being confined to a wheelchair can have on the body," Smith said. “Paralyzed individuals must spend time out of a seated position on a regular basis.  Being upright puts weight through the body, which maintains bone density, prevents muscle contracture, helps with circulation, and much more.”
 

Paralysis is more than losing motor function. 

A large part of living with paralysis is learning to maintain a body that is no longer in full communication with the brain.  Paralyzed limbs don’t simply become useless dangling appendages.  Muscles become tight and spastic.  They need to be stretched and re-positioned regularly to avoid locking up.  Skin breakdown and pressure sores are a constant threat when too much time is spent in the same position, and bodily functions like digestion and circulation are all affected when the body remains sedentary.

EasyStand products provide sit-to-stand support. 

Their frames feature an adjustable seat bottom that rises vertically to brace the waist as the unit lifts the body to standing position.  Knee and hip supports lock to stabilize the lower body. Their most versatile unit, the EasyStand Evolv, is also EasyStand’s best seller.  According to Smith, the Evolv is often the best option for individual home use.  A large chest level tray lets users work on a computer, read, or browse the internet while standing.  More advanced features include a mobile unit that users with hand and arm function can push and maneuver around their home while standing.

EasyStand-GliderThe EasyStand Glider is another popular model.  The Glider enables active standing by providing arm handles and lower body range of motion.  This lets users move the arm handles to create reciprocal movement in the legs, which makes a cardio workout possible while in position.

Standing frames have proven to benefit people that use them in their homes, and have become an important part of the rehabilitation process as well.  Spinal cord injuries above the T1 level may have extreme blood pressure changes.  Orthostatic Hypotension (dropping blood pressure) can hit when the body is upright.   Standing frames are used to slowly re-acclimate the body to being upright again. 
 
Following my C4 injury in 2010, I was first placed in a standing frame one month after my accident.  I could only remain upright for a few seconds, but it marked a significant point in the recovery process.  Over time, tolerance builds as the body adjusts. 
 
Standing frames are, however, relatively expensive.  A price range of $2,200-$6,000 limits the number of people that can afford them for in-home use.  EasyStand is often able to work with insurance companies to secure financing for some people, but like most insurance appeals, the pleading can be difficult.
 
Unfortunately, in the same way that long-term rehabilitation is limited for those recovering from neurologic injury, so too are access to many of the resources like standing frames that are needed after “rehabilitation” is over.
 
 
Living with paralysis is a battle.  It's an ongoing process that requires life-long maintenance.
A major flaw in most communities is the lack of specialized health and wellness centers for the disabled, where equipment like an EasyStand can be accessed by those not fortunate enough to have a unit in there home. 
 
As difficult as it may seem for the able-bodied population to maintain a healthy and active lifestyle, the struggle is multiplied 10-fold for the disabled.  This is the crux of the NeuroHope vision: Long-term rehabilitation and accessible wellness for all of us living with neurologic injury.
 

An EasyStand is one of the three core equipment pieces needed for NeuroHope before we begin operation in early 2015.

We need your help to make it happen:

 

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Video: Denial Letter from Insurance

Last year, with the help of a local production company, we shot the NeuroHope promo video that tells my story and captures what we aim to build in Indianapolis.  (This video is featured on our home page.  You can also view it here.)

One day after we finished taping, I remained in the studio for hours and shared everything I've learned and experienced over the last 5 years, from the day of the accident and life as a quadriplegic to re-learning my first steps and the many intricacies of neurologic injury and recovery.

In the coming months, I'll be breaking down much of this "bonus footage" into short clips about different topics in an effort to keep the conversation going. The first video is below.  In it, I share one of the many denial letters my insurance company sent to me throughout my recovery.   INCREDIBLY, it claims that I wasn't progressing enough to justify extended therapy.

The need for NeuroHope in a nutshell.

Be sure to "Like" NeuroHope on Facebook, and click "Subscribe" on YouTube to receive updates from our channel.

 

NuStep Recumbent Trainer Donated to NeuroHope

We began a crowdfunding campaign in August to help raise start-up costs for NeuroHope. The first equipment piece on our wish list, a piece that Nora and I consider an integral part of any rehabilitation and wellness clinic, was a NuStep recumbent cross trainer. Now, we are thrilled to announce that our first machine has been generously donated by NuStep!

I reached out to NuStep VP of Sales and Marketing Steve Sarns shortly after we launched the campaign and told him my story.  I explained what we are building in Indiana, and let him know the role NuStep had throughout my personal recovery. A NuStep was the first piece of equipment I could power (ever so slightly) on my own after total paralysis. Over the course of two years, from nursing home to rehabilitation clinic, a NuStep remained part of my daily therapy as I recovered movement and built strength and endurance.

Last month Steve welcomed me to NuStep headquarters in Ann Arbor, Michigan to tour the facility. I was blown away. Not just by the campus, factory, and facility (which was much larger and structured than I imagined), but by the entire staff. This is a team that is proud of what they have created and is genuine in their mission.

photo-2Steve’s father Dick Sarns founded NuStep in 1987, but the idea was born in the 1960’s when Dick began to research exercise products for people in cardiac rehabilitation. He wanted to create an easily accessible recumbent bike-style machine that could provide a safe and effective workout for people of all ability levels. The bicycle seat and pedals, however, were a problem; they were transformed to a chair with a stepping motion. Upper and lower body movements were connected to move in a reciprocal pattern, and NuStep was born. Over the last 20 years the machine has evolved and the company has grown. Every machine is made and shipped from their Ann Arbor campus. Sarns says around 40 new machines are built and shipped around the world each day.

photo-1The NuStep is not built specifically for people living with spinal cord injury. But, what makes the machine special is the accessibility it provides for people recovering from and living with varying degrees of disability. In rehabilitation a NuStep can serve as a therapy tool that some patients may benefit from early in their recovery. Incomplete spinal cord injuries need every opportunity to get their bodies moving. They must spend every moment they can sending signals through their healing central nervous system to promote as much neuroplastic gain as possible. One of the most memorable milestones in my recovery, on par with the moment I took my first step, was the first time I used a NuStep.

The first few months of therapy after my accident consisted mostly of range of motion exercises and assisted movement from therapists. That was the extent of my abilities as a quadriplegic with only trace amounts of movement from the neck down. After three months, however, movement had faintly returned to portions of my legs, and my body had finally regained the ability to better regulate blood pressure. I still lacked the ability to sit upright on my own, but my body could finally tolerate being in an upright position without passing out. My arms were still paralyzed but my therapist thought my legs might be strong enough to give the NuStep a try. She transferred me to the seat, put my legs and hands in place, and there I sat – in a machine and on my own for the first since my accident. It took a few seconds, but the pedals budged and soon all four limbs were gliding to the movement my legs provided.

It was the first moment I no longer felt completely paralyzed. I was barely moving the machine at the lowest setting, but I was moving it. It rejuvenated me. It gave me new goals to focus on and served as the impetus to the next level of my rehabilitation.

My unique experience aside, the main benefit of these machines is their role in wellness. They were built to provide people of all ability levels a way to achieve a low impact, full body-work out. It is just as important for people with spinal cord injures to remain healthy through exercise as it is for the able-bodied population. No matter the level of motor return, all spinal cord injuries require an incredible amount of daily maintenance. A NuStep is an elliptical machine or treadmill for the disabled. The motion loosens muscles, alleviates spasticity, improves circulation, prevents pressure sores and promotes overall health. The machine has adaptations that can be easily added for individuals lacking leg or hand function, making a full cardio workout possible for nearly all injury levels.

We plan to have our NuStep available when NeuroHope opens this winter. Whether it be for open-gym wellness purposes, or as a warm-up before a therapy session, we are excited to have the addition. I can’t thank the Sarns family and the NuStep team enough. It is an incredible gesture from a company making a difference in the lives of their clients.

We hope this NuStep will be the first of several for our facility.

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NeuroHope Featured on ‘Inside Indiana Business’

NeuroHope was proud to be featured on Inside Indiana Business with Gerry Dick last week!

A huge thanks goes to IIB's Health reporter Barbara Lewis for having me in the studio to spread the word about our mission of bringing the first extended rehabilitation and wellness center to Indiana.  I was able to briefly share my journey back from total paralysis, explain what we are creating in Indianapolis, and promote our crowdfunding campaign that is currently underway.

Inside In - makin pointThe program aired in Indianapolis on WFYI (PBS) and WTHR (NBC), and on affiliates around the state all weekend.

To watch the segment, click here.  (You will find the NeuroHope thumbnail on the right of the screen)

As SCI Research Advances, Therapy Must Be Accessible

It’s an exciting time for spinal cord injury (SCI) science and research.

The last 12 months have seen breakthroughs in laboratories and therapy gyms around country, and have led to papers published in some of the most reputable publications in the world. SCI foundations and medical organizations are aggressively pursing funds to finance research they hope may bring them closer to the cure for paralysis.  Directly linked to that cure, should it ever come, will be the need for an incredible amount of rehabilitative therapy.   Long-term therapy that, in the current health care system, is nearly impossible to receive.

To be clear, the “cure” for paralysis is not around the corner.  The scientific community is nowhere close.   Strides are being made however, in discovering some of ways the nervous system works.  Scientists and doctors are embracing neuroplasticity, the concept that the nervous system is not necessarily irreparable, but in some cases can “learn” to retrain itself over extended periods of time. 

Right now, scientists are witnessing long-distance axon growth (transmission lines of the nervous system) in SCI models.  They’re studying the transplant of neural stem cells into SCI patients.  They’re even investigating ways to use technology to route signals from the brain past injury levels.

And, in April, researchers from the University of Louisville and UCLA announced the biggest news of all.  In a study that made headlines worldwide, four men who had been paralyzed for years (pictured above) shocked their own scientists when they re-gained bits of voluntary movement as a result of epidural stimulation of the spinal cord.  Each man had a stimulator surgically implanted in his spinal cord, that when turned on, mimics signals from the brain.  Movement was expected.  Electricity stimulates the cord, which stimulates the muscle.  Voluntary movement, however, was what shocked the world.   With the device turned on, all four were able to move muscles in their hips, ankles, and toes on command.

As exciting as these breakthroughs are for the SCI community, they still don’t represent a “cure”.  The four men only experience movement when the stimulation device is turned on, and that movement is minimal.   Much more research is needed, and the study resulted in more questions than answers, but it is without question the start of something exciting in the field.

But, lost in the headlines of the results, is the time, preparation, and access to therapy that the four men needed to be eligible for the procedure and for the procedure to be successful.

These are not four guys plucked out of their chairs 3 years post injury. All four had been participating in unique and aggressive wellness programs at facilities in the Christopher and Dana Reeve Foundation NeuroRecovery Network. 

DustinCrop2Dustin Shillcox is one of them.  I met Dustin shortly after his spinal cord injury, two  years before he was selected to be one of the fortunate four in the study.  Dustin and I were both injured in 2010.  Like myself, he attended Neuroworx in Utah, one of the few places in the country where aggressive, long-term therapy is accessible after injury. Dustin and I rehabbed together at Neuroworx nearly every day for the better part of 2011 and 2012.  And, we both participated in the 2012 Kentucky Derby Mini-Marathon by walking / rolling segments of the race with the Reeve Foundation.

Dustin, and the other three individuals selected, had to meet specific criteria (injury level, motor complete, time after injury, etc.) to be eligible for the study.  Once selected, they were also required to participate in 80 Locomotor Training sessions before the procedure.   Eighty sessions! Just to prepare.

After the devices were implanted in their spinal cords, 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

When the results hit the media last spring, most spinal cord injured people had the same thought: “How do I get that implant?!”

But, in spite of what it may sound like, this 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 take part 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.   Therein lies the problem. 

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

Maybe advances in stem cell research will continue, and methods to safely re-grow neurons will be discovered.  Maybe technology will advance to the point signals from the brain can be routed straight to the extremities. 

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

Right now those programs do not exist in most communities.   

Fortunately, a paradigm shift is coming.  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 is creating one in Indiana. 

Not only so programs are in place for discoveries in the future, but so programs are in place for those that need it now. That’s our mission.  With your help we will get there.

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

Photo courtesy: Christopher & Dana Reeve Foundation, Esquire.com

 

 

 

 

 

 

 

 

NeuroHope Shadowing Neuroworx this Week!

NeuroHope's DPT Nora Foster and I are visting Neuroworx in South Jordan, Utah this week. Be sure to "like" NeuroHope on Facebook, and follow us on twitter for pictures and updates! (link on the homepage)

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Neuroworx co-founders Dr. Dale Hull and DPT Jan Black were kind enough to let Nora shadow their operations this week. It is an awesome opportunity to learn from the best. Neuroworx has been the inspiration for creating NeuroHope. I came to Neuroworx 6 months after my injury, still wheelchair bound, and spent a year and a half in therapy there. I left my wheelchair behind when I came home in 2012.

Visit their website at: www.neuroworx.org to see what they have created in Utah. I view Neuroworx as the gold standard in SCI recovery. They are changing the paradigm in outpatient rehabilitation through aggressive, activity-based therapy, and long term access.

 

You can't recover from spinal cord injury in 8 weeks. They get it. We get it. Let's bring this quality of care to Indiana as well.

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We have a long way to go in our fundraising campaign, please help to spread the word. All donations help!

Whether it is a $10 contribution and a retweet to help our viral campaign, or a connection to a major donor or corporate sponsor – Everything helps!

We'll get there – Visit our campaign below!

 

 

One Summer Sunday: A Sister’s Perspective

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!

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.