2025 Meetings
Each quarter, we host a webinar to share Consortium activities, updates on current and future projects, upcoming goals, and ways to get involved. Every session ends with open Q&A so participants can ask questions, offer feedback, or raise concerns directly with leadership. We created this series to communicate more regularly with the SCI community in a format that requires no travel and no cost. Join online or by phone.
Meeting 4 | December 2025
NASCIC 2025 Year in Review and 2026 Preview
NASCIC leadership recaps seven years of growth, shares financial and project updates, announces election results, and outlines priorities for the year ahead.
Membership and Financials
Membership reached 703 across all three categories: principal, patron, and partner members. Barry Munro, Treasurer, reported that fee-for-service consulting work carried the organization through a gap period between major grants. A $100,000 renewal grant from the Craig H. Neilsen Foundation arrived in November for year two of the SCI Powered Network project.
SCI Research Advocacy Course
The course now has 664 registered users with 206 graduates, split roughly 50-50 between people with lived experience and early-career researchers. The team is exploring shorter formats, including partnership with Unite 2 Fight Paralysis and their Lab Rat program that places community members directly in research labs. A website migration caused some technical issues with passwords and registration that are being addressed.
SCI Powered Network Results
Phase one surveyed 448 respondents about their information needs. The findings: 83% report difficulty accessing SCI health information. The team developed a framework covering 64 health conditions, tagged and categorized to feed into an AI-assisted search system. The goal is to help people find credible, trustworthy, accessible, and relevant information when they need it. Phase two will test this framework through pilot programs with five partner organizations.
Project Review Committee
The committee reviewed incoming research requests and engagement projects throughout the year. Members recognized: Jeffra Welden, Ryan Gebauer, Jeff Pagels, Patricia Guerra, Jason Biundo, Ana Lucas-Osma, Tim Hopper, Mackenzie Wann, and Rob Wudlick. Claudia Garofalo and Anita Kaiser rotated off after extended service. Letters of support dropped compared to 2024, which may be in part due to the Department of Defense Spinal Cord Injury Research Program losing its $40 million allocation.
Election Results and Leadership Changes
Jerrod Kerr moves from Vice President to President. Anita Kaiser was elected Vice President. Jeff Welden joins the Executive Council as a delegate. Barry Munro continues as Treasurer. Ian Burkhart shifts to Past President. Gabriela Ocampo serves as Interim Executive Director. Jen French, a founding member and past president, rotates off the Executive Council after years of leadership.
2026 Priorities
The Patient-Focused Drug Development initiative will culminate in a virtual meeting planned for September. Working with the FDA, the team will produce a Voice of the Patient report documenting what matters most to the SCI community, including treatment gaps, quality of life struggles, and priorities that differ from public perception. The goal is to give pharmaceutical, biotech, and device companies a clear picture of what their products need to accomplish.
Advocacy efforts continue with Unite 2 Fight Paralysis hosting their annual symposium in Washington, D.C. in February, followed by a Capitol Hill push to restore federal research funding.
Community Discussion
Mac, a Paralyzed Veterans of America board member, spoke about the ongoing challenge of getting policymakers and researchers to prioritize what people with SCI actually need. Rob raised concerns about rural healthcare access, noting that telemedicine reimbursement cuts post-pandemic have made an already difficult situation worse for people outside major cities.
Hosted by Ian Burkhart, NASCIC President.
Meeting 3 | September 2025
PVA and ASCIP Conference Highlights
Jerrod Kerr, NASCIC Vice President, reports on findings from the Paralyzed Veterans of America Summit and the Academy of Spinal Cord Injury Professionals conference. Both gatherings featured more than 50 sessions covering quality of life research, clinical practice, and emerging technologies.
Nutrition, Exercise, and Body Composition
Research presented at PVA confirmed that people with spinal cord injury need roughly 72% of the calories an able-bodied person requires. Sessions covered portion control, hydration, and the connection between dry mouth and increased UTI risk. Katie White presented on adaptive yoga, with the main takeaway being that movement matters most when done with community support. A separate study on home-based therapy showed that electrical stimulation combined with exercise produced measurable health improvements.
Respiratory Management
For those unfamiliar with high-level injury care, sessions on diaphragm pacing proved eye-opening. Dr. Raymond Onders presented research showing a 70% success rate in helping patients reduce ventilator dependence through electrode implantation. Earlier intervention tends to produce better outcomes.
Bowel, Bladder, and Insurance Battles
The Burke Rehabilitation Hospital team shared their approach to post-discharge bowel and bladder support, including educational videos, follow-up calls, and caregiver training resources. On the insurance front, presenters discussed peer-to-peer appeals where physicians advocate directly to insurance company doctors. The message: equipment denials can be overturned with proper documentation and a physician willing to fight for their patient.
Caregiving and Provider Burnout
Denise Fyffe from Kessler Foundation was highlighted again for her work on caregiver support. The conferences also addressed empathy burnout among healthcare providers, noting that doctors, nurses, and therapists sometimes retreat from patients when they feel unable to help, or over-extend until they burn out entirely.
AI in Research
The research community remains divided on artificial intelligence use. An anonymous survey found that 85% of researchers use large language models despite official guidance discouraging it. Nature journal guidelines now require disclosure of any AI use beyond grammar checking. At the University of Utah, rehabilitation teams are testing smart home technology in inpatient rooms, then mapping successful devices into patients' homes after discharge.
Devices and Pharmaceuticals
Onward Medical's Arc device was featured on 60 Minutes with Anderson Cooper, and the company now has 24 clinical sites accepting patients. Anuvo continues refining its transcutaneous spinal stimulator based on community feedback, including questions about skin impact and daily use patterns. NerveGen presented promising results for NVG-291, a drug showing neuron regrowth while preventing cells from becoming cancerous.
Funding and Advocacy
The Spinal Cord Injury Research Program lost its entire $40 million federal allocation when the Congressionally Directed Medical Research Program made cuts. The presentation encouraged attendees to contact their representatives through Unite 2 Fight Paralysis to push for reinstatement. The closing observation: conferences need more people with spinal cord injuries attending and making noise.
Hosted by Jerrod Kerr, NASCIC Vice President.
Meeting 2 | June 2025
Caregiver Support Research and New Programs
Jeanne Zanca, PT, and Denise Fyffe, PhD, from Kessler Foundation share findings from their ongoing research into what family caregivers of people with spinal cord injury actually need and the programs they've built to address those gaps.
Focus Group Findings
The presentation draws on structured conversations with more than 64 caregivers across the United States and Canada. The research team worked with a caregiver advisory board made up of partners and parents of people with SCI to identify five topics worth examining: getting practical help from others, financial strain and out-of-pocket costs, managing life stress while caregiving, relationship changes between partners, and physical and emotional well-being for caregivers themselves.
Among participants, roughly half reported taking on additional debt since becoming a caregiver. Many described purchasing accessibility equipment, home modifications, and medical supplies that weren't covered by insurance. Others talked about the isolation that builds over time as early support from friends and extended family fades. The research also captured how caregiving can shift the dynamic in a marriage, with some partners feeling more like nurses than spouses.
Three Programs Now Available
The SCI Community Connect Program offers Zoom consultations with experienced clinicians, available to anyone regardless of location. For New Jersey residents, the program also includes in-home caregiver training with physical and occupational therapists who specialize in spinal cord injury care. The program covers compensation for training time and childcare costs to reduce barriers to participation.
The SCI Caregiver Peer Mentoring Program pairs family caregivers seeking support with trained mentors who have lived experience as SCI caregivers. Mentors complete training through the Christopher and Dana Reeve Foundation's peer support program, and mentoring happens primarily by phone or video call.
The SCI Navigator Program provides up to two years of personalized support for care coordination, advocacy, resource connection, and barrier reduction. The navigator team includes occupational therapists, social workers, mental health professionals, and peers who conduct full needs assessments and help families prioritize goals.
Resources Mentioned
During the discussion, presenters referenced Help Hope Live as an alternative to GoFundMe for medical fundraising, noting its different tax implications. They also mentioned the Paralyzed Veterans of America guide on managing personal care assistance and Shepherd Center's caregiver resources as helpful starting points for families making the transition from hospital to home.
Hosted by Denise Fyffe and Jeanne Zanca, Kessler Foundation.
Meeting 1 | March 2025
SCIRP Funding Cut and Community Advocacy
NASCIC addresses unexpected news that the Spinal Cord Injury Research Program was eliminated from the fiscal year 2025 budget, and outlines how the community can respond.
The SCIRP, part of the Congressionally Directed Medical Research Programs funded through the Department of Defense, had provided approximately $40 million annually for SCI research since 2009. The program was cut as part of broader reductions affecting 23 congressionally mandated research programs.
What set SCIRP apart was its requirement for community involvement at every level, from research prioritization to application review. People with lived experience helped shape which projects received funding and how studies were designed. The program also supported early-stage and translational research that industry typically will not fund because it lacks immediate commercial applications.
NASCIC continues to offer resources for those who want to stay engaged in research. The free SCI Research Advocacy Course covers the research process, SCI biology, and how to serve as a research advisor. Graduates can join the Project Engagement Database, which connects researchers with individuals who have lived experience for advisory roles and study participation.
Hosted by Ian Burkhart, NASCIC President.
