Share Your Knowledge
U2FP is helping to place individuals with a spinal cord injury into SCI research labs to act as lived-experience consultants.
- Benefits for Research Labs
Having an individual with an SCI embedded with a research team is tremendously valuable for all parties involved. It keeps the lab focused on the practical implications of its goals, allowing researchers ongoing access to someone whose experience with spinal cord injury isn't confined to abstract knowledge.
- Benefits for SCI Community
Being a consultant introduces the person with lived experience of the injury to the complex challenges facing researchers. This dynamic relationship allows both parties to more deeply confront the challenges and nuances of delivering restorative treatments for this difficult injury.
How It Works
- Interested SCI Researchers or Community members apply by completing our intake form (link below)
- Applicants are interviewed by Matthew Rodreick (U2FP's Executive Director)
- SCI Researchers or Community members are notified of their placement status soon after their interview
Impact
Watch this short video featuring four PLEX participants who explain the impact of this program.
Testimonial Participants:
Chris Barr has a C4/5 level spinal cord injury and consults with the following groups:
- Spinal Cord Injury Research Program (Congressionally Directed Medical Research Program, Department of Defense)
- Ferguson Lab at the University of California San Francisco
- Dulin Lab at Texas A&M University
Laura Grabowski has a C6/7 level spinal cord injury and consults with the Floyd Lab at Emory University.
Jake Chalfin has a C6 level spinal cord injury and consults with the Lane Lab at Drexel University.
Nancy Nicholas has a C5 level spinal cord injury and consults with the following groups:
- Blackmore Lab at Marquette University
- Spinal Cord Injury Outcomes Partnership Endeavor (SCOPE) which is part of the American Spinal Injury Association (ASIA)
Listen to researchers Murray Blackmore (Marquette University) and Michael Lane (Drexel University) talk about the impact their SCI Consultants Nancy Nicholas (Marquette) and Jake Chalfin (Drexel) are making in their labs.
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Lab Rats (part 1)
Jason and Matthew interview Dr. Murray Blackmore (Marquette University) and Nancy Nicholas (person with lived experience of SCI) about Nancy’s addition to the Blackmore Lab as a consultant. We talk about the relationship that developed, the impact it's had on the Blackmore Lab, and the impact relationships like this could have on the wider research landscape.
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Lab Rats (part 2)
Jason and Matthew talk with Michael Lane (Researcher at Drexel College of Medicine) and Jake Chalfin (SCI advocate and chair of the PA Spinal Cord Advisory Research Council) as we continue with part 2 of our series on the experience of SCI community consultants in research labs. This discussion continues our exploration around the unique nature of this relationship and its impact on the research process.
News
What follows is the final summary report from the Food & Drug Administration's (FDA) Listening Session which was organized by U2FP. The below report has been officially approved by the Patient Affairs Group at the FDA.
Opening Remarks: Description of Spinal Cord Injury (SCI) as a Multi-System Condition
SCI is a multi-system condition with a population of patients that exhibit a heterogeneous set of symptoms and secondary complications. It is not well served by traditional clinical trial designs with only one or two clearly defined...
More Questions?
Have more questions before filling out the intake form? Email matthewrodreick@u2fp.org
