September is Spinal Cord Injury (SCI) Awareness Month in the United States, and this year the month is reaching well past the SCI community's own circle. A Nasdaq display in Times Square is carrying the community's message to New York. A session proposal put spinal cord injury in front of the South by Southwest (SXSW) voting community. A federal research program that was eliminated last year is funded again after a year of community advocacy. On September 29, the U.S. Food and Drug Administration (FDA) will listen while people living with SCI say what matters most to them. Below is what this year has built toward, and what is still open to you.
September 5 Opened the Month
World Spinal Cord Injury Day falls on September 5 each year and is marked by the International Spinal Cord Society (ISCoS), the global professional society for SCI care and research. It opens a month that the United States sets aside for spinal cord injury. The U.S. Senate has designated September by resolution in recent years, most recently S.Res.440 for September 2025.
NASCIC's 2025 SCI Awareness Month article covered the observance from research and policy through community support. This year the focus is narrower. It is what happened this month, who made it happen, and what is still open to you before the month ends.
Bigger Audiences: Times Square and SXSW
NervGen Pharma put the SCI community on a screen in Times Square. ANEUVO put spinal cord injury into a proposal for SXSW 2027. Neither audience is a medical one, and that is the point.
NervGen Pharma on the Nasdaq Display in Times Square
NervGen Pharma is marking SCI Awareness Month with an awareness initiative in New York City, featuring the SCI community on the Nasdaq digital display in Times Square this September alongside the logos of leading SCI advocacy organizations. NASCIC's logo is included at NervGen's invitation. In NervGen's quarterly update of August 13, 2026, Chief Executive Officer Adam Rogers said:
September also marks SCI Awareness Month and will include an externally led Patient-Focused Drug Development meeting, providing a notable forum to elevate the perspectives and priorities of individuals living with SCI.
Adam Rogers, Chief Executive Officer, NervGen Pharma
A Times Square screen reaches people who were not looking for spinal cord injury information. Some of them will leave with it anyway.
ANEUVO's SXSW 2027 Session Proposal
ANEUVO, which works with NASCIC on community engagement, submitted a session proposal for SXSW 2027 titled When Technology Brings Healthcare Home. The proposal uses spinal cord injury as its case study for how non-invasive neurotechnology is bringing advanced rehabilitation out of hospitals and clinics and into people's homes, what the evidence shows today, and what it would take to widen access safely, equitably, and at scale.
SXSW community voting was open from August 5 to 23, 2026 and has closed. SXSW announces its selections later in the year, so for now the session is a proposal and nothing more. What it already did was put spinal cord injury in front of the technology and culture crowd that votes on the SXSW program.
On September 29, the FDA Is Listening
On Tuesday, September 29, 2026, people living with spinal cord injury and their care partners will describe what matters most to them about symptoms, daily life, and treatment, while FDA staff and treatment developers listen. This is an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting, the first for spinal cord injury. What is said becomes a Voice of the Patient report that goes to the FDA, where it can shape how clinical trials are designed and which outcomes are weighed when SCI therapies are reviewed.
The meeting is organized by a coalition of national SCI organizations. NASCIC is a co-host, and past NASCIC President Ian Burkhart co-hosts the meeting itself. It is free, it is virtual, and registration is open.
- Date
- Tuesday, September 29, 2026
- Time
- 10 AM to 3 PM ET (7 AM to 12 PM PT)
- Cost
- Free
- Format
- Virtual
- Who speaks
- People living with SCI and their care partners
- Who listens
- FDA staff, treatment developers, clinicians, and researchers
Add your voice on September 29
Registration is free and takes a few minutes. The FDA does not hear from the SCI community this way often, and what you say becomes part of the record.
Full meeting background is on the NASCIC Patient-Focused Drug Development page.
The Sponsors Behind the September 29 Meeting
Sponsorship pays for the meeting itself. It covers production, the medical writing behind the Voice of the Patient report, and honoraria for the people with spinal cord injury and care partners who take part, so that adding your experience to the record costs you nothing.
- Anonymous Family Donor
- AbbVie. Advancing elezanumab, an investigational antibody holding FDA Orphan Drug and Fast Track designations, in Phase 2 study for acute cervical spinal cord injury.
- American Spinal Injury Association (ASIA). The professional society of spinal cord injury clinicians and researchers, and a co-host of the September 29 meeting.
- ANEUVO. Cleared by the FDA in April 2026 for ExaStim, a non-invasive spinal cord stimulation system for clinic and home use in chronic incomplete injury.
- Anonymous Family Donor. A family whose gift helps bring the community's voice to the FDA on September 29.
- Christopher & Dana Reeve Foundation. Awarded a three-year federal grant in August 2026 to continue leading the National Paralysis Resource Center, and funding four new preclinical SCI studies with Spinal Research.
- Craig H. Neilsen Foundation. A NASCIC funder whose renewal grant supports Phases 1 and 2 of the SCI-Powered Network.
- DRIVEN Neuro. A nonprofit formerly named Conquer Paralysis Now, operating neurorecovery centers in Las Vegas and Indianapolis for people whose rehabilitation coverage has ended.
- Kessler Foundation. The rehabilitation research nonprofit, and one of the coalition organizations co-hosting the September 29 meeting.
- Kringle Pharma. Completed enrollment in its Japanese Phase 3 study of KP-100IT, a hepatocyte growth factor therapy for acute cervical injury, and is preparing an approval filing in Japan.
- Lineage Cell Therapeutics. Enrolling subacute and chronic SCI participants in the DOSED study of OPC1, with a second study site now open at Rancho Los Amigos.
- NervGen Pharma. Beginning site activation and screening in September 2026 for RESTORE, its Phase 3 registrational study of NVG-291 for chronic tetraplegia.
- ONWARD Medical. Delivering the first ARC-EX systems for home use in the United States after FDA home-use clearance, with the Empower BP study under way.
- Paralyzed Veterans of America (PVA). Host of the PVA Healthcare Summit + Expo, and a co-host of the September 29 meeting.
- SCoBIRC. The Spinal Cord and Brain Injury Research Center at the University of Kentucky, and one of the coalition organizations co-hosting the September 29 meeting.
- SCOPE. The Spinal Cord Outcomes Partnership Endeavor, an international academic and industry partnership improving how SCI clinical trials are designed and measured.
- Wings for Life. The international spinal cord research foundation, and a co-host of the September 29 meeting.
The Co-Hosting Coalition
The September 29 meeting is co-hosted by SCI organizations working in partnership: NASCIC; the Christopher & Dana Reeve Foundation; United Spinal Association; Paralyzed Veterans of America; Unite 2 Fight Paralysis; the American Spinal Injury Association; SCOPE, the Spinal Cord Outcomes Partnership Endeavor; Wings for Life; the Craig H. Neilsen Foundation; SCoBIRC, the Spinal Cord and Brain Injury Research Center at the University of Kentucky; and the Kessler Foundation.
Several of these organizations appear in the sponsor list above as well. They are giving both time and money to the same meeting.
Where the Year's SCI Care Gets Discussed
The month opened with the SCI community in front of the clinicians who deliver its care. Paralyzed Veterans of America held its PVA Healthcare Summit + Expo from August 30 to September 2, 2026 at Horseshoe Las Vegas, its annual clinical meeting on spinal cord injury and disease, multiple sclerosis, and amyotrophic lateral sclerosis care.
The Academy of Spinal Cord Injury Professionals (ASCIP) followed with its Educational Conference and Expo from September 6 to 9, 2026 at the Grand America in Salt Lake City. NASCIC past president Jen French gave the keynote. Both meetings have now concluded.
Craig H. Neilsen Foundation and the SCI-Powered Network
The SCI-Powered Network is NASCIC's community-driven framework for vetting and distributing trusted SCI health information. Phase 1 built it with a working group of 20 organizations and a community survey that drew 448 respondents. Phase 2 is now developing the SCI Seal of Approval process, so that vetted information is available for any organization to use rather than held by one.
Both phases are supported by a renewal grant from the Craig H. Neilsen Foundation. The Phase 1 findings were presented in a recorded SCI Connections webinar.
The Community's Win of the Year
The Department of Defense (DoD) Spinal Cord Injury Research Program (SCIRP) was eliminated in the March 2025 federal budget. It was restored at $33 million for fiscal year 2026 through the Defense Appropriations Act on February 3, 2026, after a year of coalition advocacy led by Unite 2 Fight Paralysis. NASCIC leadership joined the Capitol Hill day in February 2026. Program details are on the SCIRP program page.
That result belongs to the community. It came from people with spinal cord injury, their families, and the organizations that represent them, contacting their representatives over a full year. Unite 2 Fight Paralysis is now working to widen the program for fiscal year 2027.
Capitol Hill on September 17: the BreakThru SCI Congressional Briefing
BreakThru SCI, a new grassroots advocacy organization founded by a family whose son sustained a cervical spinal cord injury, hosts a Congressional Briefing on Wednesday, September 17, 2026 at 12:30 PM ET in the Dirksen Senate Office Building, with the support of the Christopher & Dana Reeve Foundation. The briefing covers the biology of SCI, emerging therapies, patient perspectives, and regulatory pathways.
This is a community effort rather than a NASCIC program, and NASCIC has no formal relationship with the organization. It is one more room this month where people with spinal cord injury speak for themselves.
Free iBCI-CC Registration Closes Friday, September 18
The 103rd Annual Fall Conference and EXPO of the American Congress of Rehabilitation Medicine (ACRM) takes place October 12 to 16, 2026 at the Washington Hilton in Washington, DC. It closes with the 3rd Annual Meeting of the Implanted Brain-Computer Interface Collaborative Community on Friday, October 16.
That meeting brings device developers, regulators, clinicians, payors, and people with lived experience into one room, including an FDA regulatory science panel. NASCIC is a charter member of the iBCI-CC. The morning Public Meeting is free and open to anyone who registers, and that registration closes on Friday, September 18.
What the Month Adds Up To
Times Square, a SXSW proposal, two clinical conferences, a Congressional briefing on September 17, a restored federal research program, and an FDA meeting on September 29. Sponsors and hosts open those rooms. The community fills them. The pattern is the same across all of it. Nobody speaks on the community's behalf where the community can speak for itself.
Two things are still open to you this month. Free iBCI-CC registration closes Friday, September 18. Registration for the September 29 SCI EL-PFDD meeting is open now. NASCIC's Spring 2026 Milestones in SCI Clinical Trials covers the research side of several of the programs named above in more depth.
Disclosure and non-endorsement
Organizations named in this article are recognized for their SCI Awareness Month activities and their support of the SCI EL-PFDD meeting. Sponsors of that meeting are not necessarily sponsors of NASCIC. Mentions describe publicly announced milestones and do not constitute NASCIC's endorsement of any company, product, or therapy. NASCIC's logo appears in NervGen's Times Square display at NervGen's invitation and does not imply endorsement of NervGen or its programs.
