On CureCast, the podcast of Unite 2 Fight Paralysis (U2FP), Ian Burkhart makes the case for the spinal cord injury (SCI) community to take part in the first Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting for spinal cord injury. Ian is past President of the North American Spinal Cord Injury Consortium (NASCIC). On Tuesday, September 29, 2026, the U.S. Food and Drug Administration (FDA) listens while the community speaks. The meeting is free and virtual. Registration is open now.
Episode 146: Wanna Talk to the FDA?
U2FP's CureCast podcast released Episode 146, "Wanna Talk to the FDA?", featuring Ian Burkhart: C5 tetraplegic, brain-computer interface pioneer, past President of NASCIC, and a principal organizer of the SCI Patient-Focused Drug Development (PFDD) initiative. Ian also co-hosts the September 29 meeting itself.
The episode frames the SCI EL-PFDD meeting as a once in a generation opportunity for the SCI community to tell the FDA directly what matters most in spinal cord injury drug development. The invitation is wider than people living with SCI. Care partners, researchers, clinicians and funders are asked to be there too. The message to all of them is the same. Be present on September 29.
CureCast is produced by Unite 2 Fight Paralysis. Listen to Episode 146 on the U2FP website.
What an EL-PFDD Meeting Is
An Externally-Led Patient-Focused Drug Development meeting is the FDA's formal route for hearing from patients about what they want a treatment to achieve and which tradeoffs they will accept. What the community says is captured in a Voice of the Patient report that informs how the agency evaluates future therapies.
On September 29, people living with SCI and their care partners share their experiences while FDA staff and treatment developers listen. The FDA describes the approach in its Patient-Focused Drug Development guidance series. The coalition behind the SCI meeting, and what the report does once it exists, are on the NASCIC Patient-Focused Drug Development page.
Register Before September 29
- DateTuesday, September 29, 2026
- Time10 AM to 3 PM ET (7 AM to 12 PM PT)
- CostFree
- FormatVirtual
Tell the FDA what matters most
Registration is free and takes a few minutes. What is said on September 29 becomes part of the record the FDA and treatment developers can use.
Registration is handled on scipfdd.org.
Episode attribution
CureCast Episode 146, "Wanna Talk to the FDA?", is produced and published by Unite 2 Fight Paralysis. This article links to the episode and does not reproduce it.
