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At Burke Neurological Institute: How Robots are Helping Persons with Spinal Cord Injuries

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PHOTOS COURTESY OF Jamie Petrone

When you first meet Jamie Petrone, it is impossible not to notice her engaging smile and friendly personality. The 42-year-old has an optimistic outlook on life which is a bit surprising given her diagnosis of transverse myelopathy (TM), a type of spinal cord injury that has caused her to use a wheelchair for much of her life. But instead of focusing on her disability, Petrone has broken through barriers and is changing people’s perception of what it means to be disabled.

Petrone was a 19-year-old student studying musical theater at Shenandoah Conservatory and one day was not able to get out of bed. She had suffered a stomach ache at the time and was taking a prescription medication which resulted in a severe allergic reaction and a nearly fatal illness called Stevens-Johnson syndrome. Doctors believe that this syndrome triggered her to have TM which ultimately led to paralysis in her lower extremities but it took almost ten years before she was definitively diagnosed with TM.

The Mission of BNI

Despite this, Petrone is amazingly engaged in studies to get her to walk again with the help of a team of clinicians and scientists at the White Plains-based Burke Neurological Institute (BNI). BNI is a leading, nonprofit, research institute devoted to curing neurological diseases and injuries. Sixteen laboratories and more than 100 people in the Institute focus on identifying and testing novel strategies to repair the brain and the spinal cord. Strategies include drugs to unlock repair in the damaged spinal cord as well as training devices using the latest robotic technology.  BNI is based at Burke Rehabilitation Center and works in conjunction with Weill Cornell Medical.

BNI occupies a unique space for those with neurological impairments including patients suffering from a host of health problems such as stroke, spinal cord or traumatic brain injuries, cerebral palsy, neurodegenerative and retinal degenerative diseases. “The institute is focusing on chronic neurological disability and neurorestoration or repairing the nervous system,” explains Christine E. Hughes, the Vice President of Institutional Advancement at BNI. “We don’t want to teach people how to use a wheelchair or crutches. We want to repair the patient’s nervous system so they can walk again.”

Petrone was lucky enough to be participant in a clinical trial at BNI in the Lower Limb Robotics Program with Amy Bialek, a physical therapist and Chappaqua resident conducting research on the use of robotics for spinal cord injury.

Petrone on the Today Show
PHOTOS COURTESY OF Jamie Petrone

Limited Options for Petrone

The clinical trial which Petrone enrolled in had strict criteria and Bialek screen hundreds of patients before she found a small subset of patients that met the criteria. Currently, for those that do not qualify, BNI is developing wellness trials to identify how to keep those with spinal cord injury fit and read for more emerging clinical studies. When you have a chronic condition like Petrone’s, physical therapy offers limited benefits and insurance often drops patients after several sessions.

“The doctors gave me an ultimatum. They said if you don’t get out of this wheelchair, you will get worse. So then the battle becomes how do I get out of this wheelchair?,” asks Petrone. “It is easy to lose hope. A lot of patients don’t have that mentality to push themselves.”

Robotics at BNI

It is no wonder that Petrone, a former high school softball player, dancer and swimmer is doing everything possible to win that battle and regain her ability to walk.  Enter the EKSO, a wearable battery-operated exoskeleton that enables individuals like Petrone to stand and walk on level surfaces. The EKSO is just one of several therapeutic devices/robots that BNI is testing to help patients repair their nervous system. And while their clinics have robots to help restore function in other areas of the body for patients such as the wrist, arms and hands, the team at BNI is betting that a combination of a robot to train new functions combined with a drug to optimize new learning in the damaged nervous system will be the way forward.   

“When Jamie is upright with the help of the EKSO,  our data to date suggests that she is improving her mental health, her skin and bone integrity and her cardiopulmonary function. There needs to be a place that is leveraging the best in contemporary neuroscience to get people out of their wheelchairs,” urges Bialek. Essentially, the EKSO is helping Petrone rebuild neural pathways and her muscle memory through repetition. In the beginning, she had to look in the mirror when she used it but now she does not need it. “I see real progress with it.” Petrone’s situation is also unique in that she can’t take any prescription pain killers as many spinal cord injury patients do because of her Stevens- Johnson syndrome so exercise and restorative therapy offered at BNI really is her only hope.

Petrone with Amy Bialek
PHOTO BY Stacey Pfeffer

Petrone likes to keep active whether it be through adaptive sports such as waterskiing and biking or her performing career which is just as impressive as her determination to walk again one day. Petrone currently is the Executive Director & Founder of THISAbility, a Performing Arts Conservatory and Professional Theatre Company, cultivating inclusion in the arts. She is also the musical director for numerous schools in Westchester County through The Westchester Sandbox Theatre in Mamaroneck and Queens Theater in New York City, and teaches voice and piano privately.

She originated the role of Bonnie in the Off-Broadway show, The Healing, by Samuel D. Hunter (NY Times Critic Pick) and has also had recurring television roles on Madam Secretary and Law & Order SVU. In addition, Petrone was featured on the Today Show segment “Everyone Has a Story” where she sang and is also the subject of a documentary called And Seen which has won awards at film festivals and is continuing to play on the festival circuit.

The life of a performer is hard with Petrone auditioning for several roles but hers is ever more complicated by her disability and the therapy she requires to help her maintain her independent and active life. (Petrone lives alone, drives a car with hand controls and travels extensively.) Insurance wants her to receive treatment or therapies only in Connecticut where she resides. But Connecticut does not have access to state-of-the art rehabilitation therapies like those offered at BNI.

Besides auditioning for her roles and her various jobs, Petrone has also participated in a boot camp for spinal cord injury patients at the Kennedy Krieger Institute which is affiliated with John Hopkins University in Baltimore. When Petrone first went there, she was introduced to various robots to help her regain function. I felt like I was only getting compensatory therapy until then. I felt like I had wasted years of my life in this wheelchair. Why didn’t I know about these therapies?,” she asked. Petrone and medical experts agree that actor Christopher Reeve pioneered to change the paradigm of how spinal cord injuries are treated.

“There are a lot people that don’t know what is available to them. I wish that people knew about the advances in technology and what is happening more regularly now – these restorative programs could make a real difference in people’s lives,” Petrone noted.

Still Petrone wonders about what will happen to her when the study ends. “What happens next?,” she asks. “I see progress and I am killing myself to keep going – I have to keep going.”

New Grant Announced for Patients with Neurological Impairment

But there is some good news in store for patients like Petrone. Governor Andrew Cuomo just announced this summer a $5 million grant that will allow NeuroCuresNY, Inc. (NCNY) to conduct a two-year demonstration of its unique clinical trial network and process for testing drugs to treat disability due to neurological impairment. NCNY is a not for profit initiative and BNI is one of the founding members of it. The demonstration trial will focus on stroke, but set the table for combine the use of medication to repair the brain along with robotic training technology like the EKSO that Petrone used in her trial. The two-year trial will first focus on stroke patients but there are plans to evaluate treatments for disability due to other neurological conditions such as Alzheimer’s disease and spinal cord injuries like Petrone’s.

Commenting on the grant, Dr. Rajiv Ratan BNI’s Director said that “millions of Americans and their families struggle on a daily basis with the challenges from being disabled from neurological diseases such as stroke and spinal cord injury. The enduring lack of treatment options to significantly address the challenges that people with these neurological conditions face highlight the need for a novel, game-changing approach.”

State of the Art Classroom Learning Tools Explained at CSF Fundraiser

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Middle school students from Seven Bridges Middle School demonstrate projects from the STEAM curriculum.

April 28, 2017  Briarcliff Manor— Donations and grants to the Chappaqua School Foundation (CSF) provide funding for special projects that can otherwise be well out of reach of the Chappaqua Central School District’s budget; the CSF’s annual gala has thus always been vital to gathering support from parents inside the Chappaqua Central School District. This year, as in past years, a group of kids who have benefited were on hand inside the Trump National Golf Club to enthusiastically show hundreds of attendees all that they and their classmates are learning–thanks to these purchases. For more information about the Chappaqua School Foundation, visit www.chappaquaschoolfoundation.org

PHOTOS BY Grace Bennett

Two third graders in the Chappaqua School District demonstrate how new 3D Virtual Reality Computers are being used to help them learn.
Third grade Grafflin teachers Warren Whitney (left) and Mara Cohen with the girls–all fans of the 3D technology obtained by a CSF grant in the $30K-$40K range, stated Cohen. “We’re very excited for all the different uses for it.”
Two 7th graders after they finished explaining the science of ‘Hydroponics’ which is, they assured the Inside Press, “The future of agriculture.”
(L-R) Greeley students Katie Mendez (right) and Aidan Leitch gave visitors the lowdown on a variety of inventions on the tables; they are the inventors. These included a drone, and also a prosthetic in progress, according to inventor Katie, who pursued the project on behalf of her mom who was born with one missing limb. According to Greeley Science teacher Mike DeBellis, the robotics tools and parts were possible thanks to a $2500 CSF grant.

First LEGO League Event in Chappaqua Inspires Tomorrow’s Innovators

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Story and Photos by Stacey Pfeffer

The Robert E. Bell Middle School was buzzing with young scientists and computer coders from throughout the county tinkering with their Lego robots and presenting their science experiments before a judging panel. The elementary and middle school students were participating in an international competition called the First Lego League (FLL), which took place for the first time here in Chappaqua in late January.

The event here was one of the preliminary events for FLL and consisted of both junior FLL teams (with participants ranging in age from 6-9 years old) and FLL teams with children ranging in age from 9-14 years old. There are 32,000 FLL teams competing in 88 countries in more than 1,400 events.

John Houston, Co-Director of the Hudson Valley FLL based in Poughkeepsie, estimates that there are about 1,000 students from throughout the Hudson Valley participating in FLL events this year.

At the Bell event, there were 12 FLL teams vying for the championship with towns such as Ossining, Briarcliff Manor, Larchmont and Scarsdale represented along with several teams from Chappaqua.

FLL teams are judged by a panel and participate in the event by programming an autonomous robot to score points on a themed playing field (known as the robot game) and developing a solution to a problem they have identified (called the project), all guided by FLL core values such as teamwork, friendly competition and finding solutions. All FLL teams are mentored by a coach (usually a parent) but the robot and project components are done exclusively by the children.

Team Supernova from Chappaqua gets ready to present their model

Animal Allies: The FLL Theme This Year

This year’s FLL theme for the project component was called Animal Allies, which explored how humans and animals can interact better. Team Gryffindor, a team with participants from Chappaqua and Ardsley chose “ How do we reduce avian fatalities due to human obstacles?” as their project.

The middle school students were pleased to speak with leading experts in the field such as ornithologists, bird enthusiasts and Audubon Society representatives.

The team eventually won the robotic design component and placed second overall this year, advancing to the regional semi-final tournament in Poughkeepsie this February. The team also participated last year in FLL and advanced to the world competition.

“I think that curiosity, enthusiasm and team spirit are the key attributes that differentiate Team Gryffindor. They have come together as a team, complement each others skills and they learn from each other. Curiosity leads them to dig deeper into problems, helping them come out with innovative solutions,’ said Ardsley-based co-coach and parent Rajat Goel. His daughter, Khushi loved being in FLL because “we [Team Gryffindor] get to work together, learn many different life skills, such as programming, research and presentation. All this is done while having fun. This also gives us an opportunity to look at some of the world’s biggest problems and try to solve them.”

There were also several junior teams who participated in the event. Augie DeRose, a third grader at Roaring Brook Elementary School with his team the Chappaqua Minecrafters worked on a project called Stop the Mite. Augie said he enjoyed building the Lego model and working with his team every week led by co-coaches and Chappaqua parents, Rosemary Chi and Gene DeRose. Brenda Kavner DeRose, Augie’s mother commented that “the big lesson was working as a group, incorporating everyone’s ideas and learning how to present it.”

“Kids in the FLL program, do well because they are very motivated, and want to make a difference in the world. For most, it is the first time that they work on a long-term project where they can have an impact.

The robotic part of the competition is also a popular draw. FLL also places a considerable emphasis on collaborative skills, like gracious professionalism, and cooperation/competition, which are some of the most important work skills kids may have,” noted the event’s organizer Alexandre Eichenberger, a Chappaqua father, IBM employee and past FLL team coach and judge.

Following the Robotic design competition at FLL–Team Gryffindor showcases their experiment

Town & PTA Lend Support for FLL Event

Eichenberger noted that the FLL event was a collaborative effort with help from the PTA and the PTA STEM committee, in particular.

The Chappaqua School District also supported the event in terms of logistical help and encouraging students to participate in the competition. Joshua Block, the District’s Director of Mathematics, was instrumental in the success of the event and liaising with the District. Town Supervisor Robert Greenstein and Eric Byrne, the Assistant Superintendent of Curriculum and Instruction, both spoke at the event.

Block, who served as a judge at the event noted that, “Besides the valuable skills the students learn from FLL, I admire how persistent they were to overcome challenging obstacles in solving the problems, and produce working robots. That is probably the most important thing any kid can learn, and will help them succeed not only in school, but their careers.”

Currently the district is in the middle of developing K-12 STEAM skills and curriculum and looking to involve the entire school community in their efforts. “The PTA STEM committee has been a huge help in this, especially with their STEM fest that they are hosting on April 29th,”added Block.

“If you have a chance to attend a FLL competition, you will see numerous examples of teams helping each other, from lending each other missing parts, giving each other tips on how to build or program better robots, and generally just helping out.

The goal of FLL is to make a sporting event for children engaged in STEM- related activities and make it fun and encouraging,” said Eichenberger. For more information about FLL, please visit www.firstlegoleague.org.

Stacey Pfeffer lives in Chappaqua with her three children and husband. A frequent Inside Press contributor, her articles have appeared in NY Family Magazine, Westchester Family Magazine, Westchester Parent, and Kveller.com.

Chappaqua’s Thoughtful ‘Robochaps’ Move into Semi Finals!

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Our Robochaps Team (L-R): Coach Ajay Dhanawade, Neel Roy (5th grade), Arnav Roy (7th grade), Aniruddh Dhanawade (7th grade), Rohan Malik (6th grade), Ellie Slive (6th grade), Jordan Zeiger (6th grade), Benjamin Millerman (5th grade), Daniel Stankiewicz(6th grade), Arjun Dayal (8th grade), Coach Rajeev Malik

An ‘Animal Allies’ Topic for the Group’s Robotic Project Work Brings the Team Closer to the Finish Line

Editor’s Note:  Congratulations to the amazing Chappaqua ‘Robochaps’ for their robotics projects and a recent exciting tournament win that moves them into a semi-final competition!  Here, a note from the participants to Inside Chappaqua:

“We are a group of 5th to 8th graders from Chappaqua, NY who are participating in the FLL. The FLL or First Lego League is an organization where kids from 4th to 8th grade build robots and projects based on a particular topic. This year’s topic is ‘Animal Allies’ (see link below to read more about the project) where we have to find a way to help animals and humans coexist peacefully. We chose coyotes as our project as it is local and affects our residents. Our team won the Sleepy Hollow tournament championship and are moving on to the semifinal with other Hudson Valley FLL teams.”

Animal Allies Brochure