9037 Ron Den Lane, Windermere FL 34786
(386) 433-4022
menu item params =
global menu param =

Patient Perspectives

SESSION TITLE

Patient Perspectives 

SESSION DESCRIPTION

Consistent with the goal of increasing cultural awareness and education about disability and function after neurotrauma, Neurotrauma 2019 is pleased to present this Patient Perspective Plenary Session as the first plenary of the conference. While the Patient Perspective plenary is not new to the NNS, this year’s meeting feature two individuals with SCI who are working side by side with a multidisciplinary team of researchers to advance brain-computer-interface technology as a viable approach for increasing function for those with spinal cord injury. In addition, this session will also feature an SCI survivor who has devoted his professional life to supporting the “All of Us” national research study supporting the NIH Precision Medicine Initiative. Each individual will share their personal story about their injury and participate in a facilitated interview process supported by Session Chairs Dr. Jennifer Collinger and Dr. Mylynda Massart. Q&A time will be reserved at the end of the session to address audience questions and response to these amazing survivors and researchers.

EDUCATIONAL OBJECTIVES

At the conclusion of this session, attendees will be able to:

  1. Increase awareness of impairments and disability associated with spinal cord injury
  2. Gain perspective on stakeholder viewpoints on inclusion and participation of individuals with disabilities in clinical and translational research
  3. Consider ways in which to engage with individuals with neurotrauma related disability about their perspectives on research needs that impact function and recovery.

BIOS

Mylynda B. Massart, MD, PhD, is a board-certified Family Medicine physician at UPMC, and Assistant Professor at the University of Pittsburgh. She completed her doctoral degree at the University of Utah in Molecular Biology/Biochemistry and her medical degree from Oregon Health Sciences University. She currently serves as the Medical Director at UPMC Matilda Theiss Health Center, and as a co-director for the HUB Core: Integrating Special Populations at the Clinical and Translational Science Institute (CSTI). Dr. Massart has experience working with diverse populations across the lifespan including obstetrics, pediatrics, adults, and older adults. She has served in the National Health Service Core in Idaho working with a rural population and currently works in an underserved community in Pittsburgh. Her research interests are in developing education in genetics and precision medicine for primary care providers and trainees and to be a research catalyst facilitating the inclusion of underrepresented populations in biomedical research. She teaches residents and medical students in her clinic and at the hospital and serves as medical director for Bethany Hospice. Currently, Dr. Massart is one of the co-Investigators for the All of US Pennsylvania research project working on community education and engagement. In addition, she is working as Co-Investigator to create the local Discovery Biobank at the University of Pittsburgh and developing systems to return precision medicine results to providers and patients. Dr. Massart resides in Pittsburgh with her husband, three children and two cats.

Jennifer Collinger, PhD

Jennifer Collinger is an Assistant Professor in the Department of Physical Medicine and Rehabilitation at the University of Pittsburgh and a Research Biomedical Engineer at the VA R&D Center of Excellence.  Dr. Collinger’s research interests are related to the use of neuroprosthetics to restore function for individuals with upper limb paralysis or loss. She is developing brain-computer interface technology for individuals with tetraplegia. Her work also includes non-invasive imaging for measuring neuroplasticity after spinal cord injury or amputation.

Nathan Copeland

Nathan Copeland became the first person to have an implanted brain-computer interface that could provide sensory feedback in 2015.  Stimulation of electrodes implanted in his somatosensory cortex can evoke sensations that are localized to individual fingers.  He can also use his neural activity to control a robotic arm while receiving sensory feedback, thus “closing the loop” between motor control and sensation.  Mr. Copeland participated in the White House Frontiers Conference in 2016 where he had the chance to shake hands with President Barack Obama using his brain-computer interface-controlled robotic arm.  Mr. Copeland has a passion for Japanese culture and anime and is a member of the Pittsburgh Japanese Culture Society.  

Jan Scheuermann

Jan Scheuermann became the first person to participate in an intracortical brain-computer interface trial at the University of Pittsburgh in 2012.  She demonstrated the most sophisticated control of a robotic arm to date— controlling 10 degrees of freedom using only her neural activity.  Her contributions have been featured in numerous media outlets including 60 minutes and The New Yorker.  Ms. Scheuermann is also a writer, having published a murder mystery, “Sharp as a Cucumber”.  She is also working on a memoir detailing her personal life as well as “My Life as a Lab Rat”.  

Shawn Smith

Shawn was born and raised in Pittsburgh’s Beltzhoover neighborhood on the South Side. He is the proud father of 3 boys: Stephon age 7, Shawn the III'rd age 6, Logan age 5.  He played high school basketball and football for Langley High School, where he was the quarterback and cornerback. His professional goal has always been to run his own business. Shawn was working two jobs to provide for his family at the time of his spinal cord injury in July 2016. He was going to work at the postal service for the night shift; his car died and all the lights were off when Shawn was hit by another vehicle going 70 MPH who did not see his vehicle before impact.  Shawn is grateful for his rehabilitation team at UPMC Mercy, but he has also struggled with maintaining his health and function, transitioning back into the community, finding his “new normal”, and coping with the loss of being an able-bodied person.  Despite the emotional and physical challenges that accompanied Shawn’s recovery, he has found new life and a new purpose for himself through his family, through his lyrical writing, and through his new roles as a research engagement representative for the University of Pittsburgh’s All of Us Initiative and the Clinical and Translational Science Institute’s Research Engagement team.  Shawn is also devoting his time to supporting others with disabilities and educating the public on the power of resilience in recovery and renewal after life-altering trauma.

FUNCTION STATEMENTS

To me, function describes our ability to interact with the world.  Each person has a different idea about which tasks are important and how they should be accomplished, but in the end, function describes the extent to which we can meet these goals. My research uses technology and rehabilitation with the goal of restoring function to enable unencumbered mobility and interaction with the environment. - Jennifer Collinger, PhD

Function is a scale, from not very functional to highly functional and it can change from minute to minute depending on the circumstances.  I dream of a world in which differently abled individuals can move throughout their day without having to spend extra time, energy or pain to live their highest functional life. - Mylynda Massart, MD, PhD