Mark’s Story: A Loved One’s Perspective


The annual event, presented by the Indianapolis Business Journal, took place during an elegant breakfast at the Conrad Hilton to recognize doctors, hospitals, community programs, and volunteers who are devoted to bettering health care in Indiana. NeuroHope was humbled to be among the nominees, and honored to take home the top prize in Community Achievement.
Read the article in the Indianapolis Business Journal here!
Director of Therapy Nora Foster accepted the award, flanked at the podium by her amazing team of Sara Sale and Donna Peterson. These ladies are the heart and sole of NeuroHope. Two years ago, they took a leap of faith to join me in a daunting task. As highly trained therapists in neurologic injury, they recognized a void in care in the healthcare landscape, and from a purely altruistic motive, decided to help address it. Their effort has led to the creation of a clinic where injured individuals can continue affordable physical
Every clinic revolves around the standard of care it provides its patients. That standard begins and ends with the knowledge, skill, and compassion its clinicians provide. There is no team of therapists I would rather have leading NeuroHope than Nora, Donna and Sara. I witness their work every day, and I’ve experienced it first hand. For me, it’s personal.
Donna and Sara were two of the first therapists that worked with me following my spinal cord injury 7 years ago. Paralyzed from the neck down, I was admitted to the Rehabilitation Hospital of Indiana two weeks after my injury to begin the grueling recovery process. Donna was assigned to my case. I knew nothing about spinal cord injury. I knew nothing about the complications my body was experiencing, and I was completely in the dark about my chances for recovery. I was a floating head on a pillow with no concept of the journey that lay ahead.
Donna was with me every day for the first eight weeks of the most trying period of my life. Sara participated in a few of my early sessions as well. At a time when therapy was spent ranging my limbs, and contracting a single muscle was a major victory, they pushed me, educated me, and took the time to answer every question I had about my injury. Most importantly, they cared deeply about my progress. They were on the journey with me. Seven years later we are on a remarkable journey again.
I can not imagine three individuals more deserving of their “Hero” recognition. Not just for their role in creating NeuroHope, but for the lives they have touched throughout their entire careers.
NeuroHope was created three years ago because of a simple realization: Many patients recovering from neurologic injury are discharged from rehabilitation too soon with no place to continue their recovery. Insurance caps therapy coverage after only a few months and traditional healthcare clinics are unable to continue treatment at an affordable out-of-pocket rate.
NeuroHope’s Director of Therapy, Nora Foster (DPT), and her team of Donna Peterson (PTA) and Sara Sale (DPT) have embarked on a path to fill this void in care. From a purely altruistic motive, and with no experience in healthcare administration, they became devoted to creating a clinic that operates beyond traditional, insurance-based services.
NeuroHope integrates insurance visits with extremely discounted private-pay rates in order to provide patients with long-term care. This involves combining aggressive therapy with wellness goals to maximize recovery and improve quality of life.
In two short years, NeuroHope’s vision has proven successful. The team has created a non-profit outpatient healthcare clinic from scratch, become credentialed with Medicare/Medicaid and commercial insurance, and works with the Krannert School of Physical Therapy at the University of Indianapolis to provide students with Internship and volunteer opportunities. NeuroHope’s patient-centric model was also the catalyst behind a 2015 change in Indiana law to help fund long-term rehabilitation programs.
Most importantly, Nora and her team have helped 36 patients, ranging from spinal cord injury, brain injury, stroke, multiple sclerosis, and cerebral palsy on along their road to recovery.
This recognition is well-deserved for Nora, Sara, and Donna. Not only for the work they have done to launch NeuroHope, but for the devotion they have shown to all of their patients over the their entire careers.
The 2017 Health Care Heroes Awards will be presented at a special IBJ breakfast at the Hilton Conrad on Friday, March 3rd.
Click here for more information.
On behalf of the entire NeuroHope team: THANK-YOU to all who came to support our Open House last week!
We had a great turnout and raised more than $4,000 to provide supplemental care for our clients. Many thanks to everyone who participated in the raffles, and to the donors of the items!
If you missed the unveiling of our new video, please watch it below! It provides a glimpse of the clinic we have created, explains our mission of affordable rehab and wellness, and tells the inspiring stories of our patients.
It has been an eventful year, and we have our supporters, patients, friends and family to thank for our success. We have lofty expectations for the future, and are currently in the midst of a $40,000 campaign to help purchase equipment and sustain services.
If you were unable to attend our Open House and would like to help us reach our goal, you can make a tax-free donation here:
https://www.neurohopewellness.org/donate/
Every dollar goes directly to patient services, and EVERY DOLLAR HELPS!
Also, registration is open to JOIN OUR TEAM for the 2016 Monumental Marathon! Walk or run any length, and help us raise money this November.
Info here: TEAM NEUROHOPE
Thank you for your support!
Bill Boyd came to us in August of 2015, eleven months after a severe stroke left him completely paralyzed. Grasping the arm of his wife Dean and a four-point cane, Bill hobbled into the clinic eager to continue the hard work that brought him back to his feet.
By the time the Boyd’s had learned of NeuroHope, Bill had already made great progress in his recovery, but he still needed more therapy.
He depended on a bulky cane to walk, and he had little movement on the left side of his body, but the progress he had made up to that point was remarkable. Unfortunately, even though Bill had progressed significantly since his stroke, the Boyd’s were confronted with a familiar narrative. They were informed that Bill’s insurance had been capped. It wasn’t the first time they heard it.
“They told us he wouldn’t improve anymore, and that it was as good as he was going to get,” said Dean. “The only place that would continue to see him charged $245 for a 15-minute visit. We couldn’t do that.”
In spite of Bill’s strides, the Boyd’s came to NeuroHope frustrated. Not by his progress, but by their eleven-month struggle to keep Bill involved in the therapy he needed to maximize his recovery. The stroke on September 22, 2014 left him “unable to wiggle a toe or move a finger”, yet three weeks later, inpatient insurance was capped and Bill was in a nursing home.
“I hadn’t progressed much at that point,” says Bill. “I was still in a wheelchair and I had a long way to go.”
From the beginning, the Boyd’s recognized the importance of continuing physical, occupational, and speech therapy. Bill’s progress at the inpatient level proved it, which led to the Boyd’s decision to admit Bill into a nursing home where he would still receive daily therapy. Medicare allowed 100 days at the sub-acute level, which bought the Boyd’s valuable time. When he was discharged from the nursing home, Bill was taking steps with a hemi-walker and had regained the use of his right arm. But, he still needed more time.
Medicare covered home therapy visits for a short time, but the Boyd’s weren’t satisfied. They had witnessed Bill regain too much to give up, and they were determined to search for other rehabilitation options. Even though his outpatient insurance was capped, the Boyd’s sought out rehabilitation hospitals to see if they could pay out-of-pocket for therapy services. Only one facility would entertain the idea, and with a $245 price tag for a 15-minute session, it simply wasn’t feasible.
Last August, the Boyd’s reached out to NeuroHope’s Director of Therapy, Nora Foster for advice. Nora was Bill’s first physical therapist at the inpatient level, long before NeuroHope opened. The timing was perfect, and Bill has been coming to NeuroHope two times per week ever since. In Bill’s seven months as a client, his progress has continued. He has lost the four-point cane. He has gained strength, improved his balance, and worked tirelessly on improving his weaker left side.
Bill has been fortunate in his recovery. He has had setbacks, but all recoveries have ups and downs. Dean credits her husband’s work ethic, and the fact they were lucky enough to avoid a lapse in care to his success.
“Nora has saved us twice” Dean says with smile. “I hate to think where we would be without her.”
What was originally planned to be a small gathering to thank our contributors from last summer's crowdfunding campaign, morphed into a larger event open to anyone interested in our cause and what we are building for Indianapolis. More than 100 of you came to show your support. We were thrilled with the turnout and the passion each of you showed with your presence and by the personal conversations we had with many of you.
I also want to thank the volunteers that helped organize, set-up, and serve as "staff" for the night. Justin Davis, Rob Shaw, Katie and Markus Wilds, Jon and Sarah McAfee, Tony Allanson, Callie Burk, and Jonelle Ball were outstanding hosts for the evening. I've known them all since childhood, and it was pretty special to have them by my side on such an awesome night.
And, how 'bout that eatin'!? We had some fantastic food generously provided by some of our favorite restaurants. Pure Eatery (my favorite place in Fountain Square) donated wraps and salads for all. Iaria's Italian Restaurant supplied the delicious meatballs, and the spread from Indy's own Sushi Boss and Rocket 88 Doughnuts were gobbled up fast. I'd like to extend a big thanks to those restaurants that sponsored us!
We have come a long way since our initial fundraising push began last summer. We've opened our doors, purchased specialized equipment, changed a state law, and have started seeing our first clients. You have all played a significant role in our early success. As Allison and I explained on Wednesday, we hope you can help us spread the word past our existing network. We handed out 10 copies of a pre-written Outreach Letter to each of you that explains our mission and explains our goals. Now, we humbly ask for your help. We hope you can find 10 people in your network to send the letter. We left the title and the signature fields empty for you to fill in the fields or add a personal mesage.
If you didn't take home the hard copies, you can download the letter and print it out here. So, no excuses!
If each of you reach out to just 10 family members, friends, co-workers, or social groups, there is a solid chance we will find others interested in NeuroHope and eager to help us reach our goals. We have an aggressive plan of $50,000 to raise by next spring which will ensure we stay viable until we can apply for money from the new state law.
Someone in your network may be the key to a major foundation or grant opportunity that can change the lives of many. LET'S FIND THEM!
Today Senate Act 166, an Indiana state law to help fund long-term physical therapy programs was signed into law by Governor Pence. It’s a special day for NeuroHope, and for all the clients we will serve, because it was written specifically with our mission in mind.
For the last seven months we’ve worked closely with key state legislators (Sen. Patricia Miller, Sen. Luke Kenley, Rep. David Frizzell, Rep. Cindy Kirchhofer and others) to raise awareness to the glaring void in care for people recovering from traumatic injury. There are too many families thrown into the world of spinal cord or brain injury who soon realize that the time available for their recovery is severely limited. Many will be discharged from inpatient rehabilitation after a matter of weeks, with only a small number of outpatiet visits available for the rest of their recovery.
We first approached Senator Miller, chair of the Senate Health Committee, last fall to share my story and the vision we had for NeuroHope. Back in 2007, Senator Miller helped create the Indiana Spinal Cord and Brain Injury Research Fund. This is a wonderful fund that proves Indiana is already at the forefront of a changing paradigm of neurologic research and rehabilitation. Every year, the fund receives about 1.5 million dollars from statewide motor vehicle registrations. Every two years, the legislature decides the allowance. Previously, this money was only permitted to be used for research purposes. Last year for example, 9 researchers received grants for various projects around the state. One in particular is a very worthwhile study at the Rehabilitation Hospital of Indiana researching diabetes and neurologic injury. This is great work that will continue, but Senator Miller felt that more could be done with the fund. She quickly became our leading advocate and introduced the bill that we’ve helped shepherd through the entire legislative process. She proposed that a portion of the fund, in addition to it’s use for research, be used for the long-term treatment of neurologic injury. Specifically, for a clinic that offers extended services at affordable rates after insurance expires – the crux of our mission at NeuroHope.
In January and in March I gave detailed presentations to the Health Committees of both the Indiana House of Representatives and the Senate. You can read my testimony here. I explained the compexities of neurologic injury, and how care is limited to the amount dictacted by insurance companies. I also discussed how an independent organization like NeuroHope, that is willing to provide services outside the boundaries of traditional facilities, will help fill the void in care in Indiana.
Our mesage was clear and our message was heard! The bill passed each bipartisan committee unopposed. It passed the Senate 47-0. It passed the House of Representatives 95-0. Throughout its journey the bill never received a single vote of opposition, and was signed into law by the Governor in April.
Our model of service revolves around providing supplemental care for the patients that need it. That means longer therapy visitis, and more therapy visits. In order to do this, NeuroHope needs income outside of insurance reimbursement to offset the true cost of therapy.
As a non-profit, much of our success will always rely on fundraising. Searching for grants, organizing charitable events, and seeking out individual donors (however large or small), will always play an integral part of our sustainability. The new law now provides another potential revenue stream.
It’s not often that a grassroots organization like ours is able to help pass a law in a single legislative session.
This law will not fully fund NeuroHope! Even if we are successful in securing money from the fund, it will not be available until next year.
Nevertheless this is an important milestone for the healthcare system and for disabled individuals in Indiana and we are honored to be a part of it.
It's not everyday that you are able to witness someone's first steps after a life-changing injury, and watch revolutionary technology make it happen.
That is what took place at NeuroHope on May 11th. A video I put together to capture it is posted below.
Macy Huff, 17, is one of the fortunate few who has been able to continue therapy programs regularly ever since her C5/6 spinal cord injury in 2013. She came to NeuroHope last month, and she was already in great shape. The determination that Macy has put into her recovery and health over the last two years is remarkable, and it shows.
She doesn't have much function below her injury level, but she has worked hard to maintain her upper body strength, balance, and flexibility. Most individuals injured at C5 have little to no movement below the deltoid muscles in the shoulders. Although there may be some preservation in the biceps, a C5/6 injury typically has significant paralysis in the arms, hands, core, and legs. That means transferring, balancing, and sitting can be a challenge.
Don't let the term "robot" fool you. The device is reliant on patient input and ability. A significant amount of core strength and balance is necessary for the person to safely walk. As a result, ReWalk is typically only cleared for paraplegics who have full upper body innervation. Quadriplegics like Macy are rarely considered. So, it was thrilling when ReWalk DPTs Craig Peters and Lina Alsauskaite agreed to come to NeuroHope to provide an evaluation for her. It is incredible to see the robot in action, and to see Macy taking steps for the first time in two years.
This video puts the "simple" task of walking into perspective. You may take the ability to walk for granted every day of your life.
I hope that changes when you watch the fortitude of an individual doing everything she can to get that ability back.
(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!
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.
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.
Thank you, and stay tuned for an exciting year!
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)
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.
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!
6002 Sunnyside Rd.
Indianapolis, IN 46236
Located In The Concrete
Building Attached To The US
Lumber Warehouse
NeuroHope is a 501(c)3 non-profit that provides long-term physical rehabilitation and wellness following neurologic injury. TIN: 46-1842276
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