Once a year, the Facial Pain Research Foundation (FPRF) brings together the world’s leading scientists, clinicians, patient advocates and funders working developing improved diagnosis and therapies/cures for trigeminal neuralgia (TN) and other facial pain conditions.
The 2026 meeting was held in Chicago and lasted three days. The first evening was a chance for individuals to greet colleagues they knew and meet new colleagues in an informal setting. Lots of great new and old connections were made. The second day was filled with presentations from researchers about the work they have been doing — much of it funded by the Foundation and discussions about what should be done next.
This document summarizes the presentations from the first day, plus the closing panel where individuals with TN and those who care for them shared their experiences, plus the FPRF Board’s thinking about where the Foundation goes from here. The summary is not a substitute for any one researcher’s talk. Each of the twelve presentations and the panel has its own dedicated lay and scientific summary, which we will be sending to you as future newsletters.
This document is the bird’s-eye view: what was the room thinking about, what changed in the field this past year, what better diagnosis and new treatments are getting closer, and what comes next.
WHAT IS TN AND WHY IS IT SO HARD TO TREAT?
Trigeminal neuralgia is one of the most severe pain conditions known. Individuals describe sudden, lightning-like, electric-shock pains in the face, often triggered by everyday actions like chewing, talking, or a light breeze. Individuals can live with constant background pain on top of those attacks. Rates of self-harm and suicidal thoughts are about five times higher in TN individuals than in individuals with other types of chronic pain.
The condition has been hard to treat for two related reasons. First, what doctors have been calling “trigeminal neuralgia” for the last hundred years is not actually one disease. It is a collection of different underlying conditions that all produce similar facial pain. Some individuals have a small artery pressing on the trigeminal nerve. Some — especially younger women — don’t appear to have any artery pressing on the nerve, and their condition appears to involve damage to the protective coating around the nerve (called myelin). Some individuals have multiple sclerosis affecting the trigeminal nerve. Some have a tumor or a vascular malformation. Some have nerve damage from trauma or a previous dental procedure or facial surgery. The way these individuals are treated should be different — but our current diagnostic system does not reliably distinguish between them.
Second, many TN individuals are misdiagnosed at least once. Surveys in orofacial pain clinics show that more than 99% of individuals walking through the door with facial pain do NOT have TN — they usually have a temporomandibular disorder (TMD), a muscle-and-joint condition that can sound very similar when individuals describe it. The reverse is also common: TN individuals are sometimes told they have TMD, sinus problems, or “dental pain” for years before getting the correct diagnosis. The video shown at the closing panel — featuring individuals who waited up to twenty years for a correct diagnosis — captured the human cost of this confusion.
MAIN CONCEPTS EXPLORED
Several major themes emerged across the twelve presentations. First, TN is many diseases. Dr. Kim Burchiel from OHSU presented genetic data from a long-running, FPRF-funded study of almost 1800 individuals across nine medical centers. Different genes are linked to TN in different patient subgroups. In young women without a visible artery pressing on the nerve, the strongest signal points to a gene called BDNF — a gene that helps regulate the protective myelin coating. In other individuals, different genes (LRP1B, KCNK10/TREK-2) tell different stories about what might be going on. Different individuals almost certainly need different treatments.
Second, the way the field defines TN needs to be revisited. Dr. Don Nixdorf from the University of Minnesota and Dr. Suzie Bergman from Pacific Northwest University School of Dental Medicine challenged the room with a “telephone game” exercise that demonstrated, in real time, how easily medical information gets distorted from one expert to the next. They then showed that the diagnostic criteria everyone has been using for TN have never actually had their accuracy measured. Several leading clinicians in the room agreed: the criteria need careful revision, and the individuals in our research and clinical-trial cohorts may not all have the same condition.
Third, the brain matters. Dr. Julian Motzkin from UCSF presented results from a clinical trial of transcranial magnetic stimulation (TMS) — a non-invasive way to “turn down” brain pain signals. About half of his individuals experienced meaningful relief, and TMS is now on a path toward FDA evaluation for use in facial pain. Dr. Allan Basbaum from UCSF presented complementary work using long-term recording from individual nerve cells in the trigeminal ganglion of awake animals — a technology that did not exist five years ago — to ask exactly where in the body the pain medications we have are actually working.
Fourth, the patient experience must be at the center. Dr. Suzie Bergman, who is herself a long-term patient, gave one of the most powerful talks of the meeting on the gap between technical surgical “success” and what individuals actually live through.
The closing panel — with FPRF Board members Elizabeth Cilker Smith and Dan DiCaro, both of whom have lived with TN, alongside Melissa Baumbick of the Facial Pain Association and Dr. Babak Jahromi — drove the message home. Mr. DiCaro, who has had pain in his face for more than twenty years, told the room: “I know most of the people who appeared in our patient video eight years ago — and not one of us feels any better. We need results.”
WHAT NEW TREATMENTS ARE BEING EXPLORED?
A great deal. The room presented programs at every stage of development, from early laboratory science to clinical trials. Better existing surgery. Professor Marc Sindou from Lyon, France — one of the world’s most experienced TN neurosurgeons — showed that microvascular decompression (the operation that moves a blood vessel away from the nerve) is highly successful for individuals with clear nerve compression. Eighty-five percent of individuals with the most severe compression are still pain-free 16 years later. The challenge is for the individuals with only mild contact between vessel and nerve, where it’s hard to predict who will benefit. Combining advanced MRI imaging with genetic information may help match the right patient to the right operation.
A new way to deliver brain stimulation. Dr. Motzkin’s TMS trial showed that targeted magnetic pulses to a specific brain region produce significant pain relief, with mild side effects, in about half of individuals. He is preparing for a multi-site Phase 3 trial across UCSF, OHSU, and the University of Minnesota that — if successful — could lead to FDA approval of TMS for facial pain.
Drugs that target the “pain switch” Nav1.7. Two completely different programs are aimed at the same molecule. Dr. Heather Allen, working in Dr. Rajesh Khanna’s lab at the University of Florida, presented Compound 194, a small molecule that blocks Nav1.7 at the nerve cell’s outer surface (where it would normally drive pain) by disrupting a helper protein called CRMP2. Dr. Ana Moreno of Navega Therapeutics (whose talk was a pre-recorded video) presented NT-Z001, a one-time genetic therapy injection that uses a zinc finger protein to “turn down” the SCN9A gene — the gene that makes Nav1.7. NT-Z001 has FDA Orphan Drug and Fast-Track designations and could be in a phase I human trial in the near future.
Drugs that target the protective coating around nerves. Dr. Karin Westlund High at the University of New Mexico presented P2X4-hscFv, an antibody-like biologic that produces durable pain relief and triggers the body’s natural nerve-repair programs. A single dose returns animals to normal pain sensitivity within two weeks and the effect lasts at least three months. Dr. Jan Johansson of Artery Therapeutics, in collaboration with Dr. Lucia Notterpek, presented CS6253, a once-weekly injection that — uniquely among drugs — actually causes the body to rebuild myelin (the protective coating). Both programs are progressing toward human trials.
A drug repurposing success story. Dr. Stephen Bart from Vanderbilt University presented a Phase 2 human clinical trial showing that adding a tiny dose of the drug guanfacine — an old, FDA-approved medication for high blood pressure and ADHD — to the anesthetic lidocaine nerve block produces significantly more pain relief. The team is now developing a nasal spray version that individuals could keep at home as a rescue medication for breakthrough pain, and maybe as a preventative.
Brand-new approaches in early development. Dr. Yotam Eldar of Modulight Biotherapeutics presented an optogenetic platform that uses light to “turn down” pain-signaling nerves after a one-time genetic therapy injection — an entirely new way of treating pain that the team plans to begin testing in humans in 2028.
Dr. Eric Villalón Landeros at Loyola University Chicago presented a fundamentally new biological mechanism in pain-sensing nerves — a “neuronal membrane proteasome” — that could open up an entirely new class of pain medications in the longer term.
A diagnostic tool. Dr. Kim Burchiel of Oregon Health & Science University also presented a software tool that combines a patient questionnaire with an in-office examination to help clinicians distinguish TN from TMD — about 90% accuracy in the initial 100-patient study. With wider validation, this could help community physicians, dentists and other practitioners get the diagnosis right the first time, sparing individuals years of unnecessary procedures.
WHAT COMES NEXT FOR INDIVIDUALS? The pace of progress visible at this meeting is real. A handful of new treatments could be within twelve to twenty-four months of being tested in individuals. If the next phase goes well, several may reach FDA approval in the years that follow. The Foundation’s next operational step, announced by Executive Director Dr. Bruce Bloom at the closing panel, is to build a clinical-trial consortium across the major TN centers in the United States and abroad. The idea is to pre-build the infrastructure — agreements between institutions, clinical-trial sites that already know how to run TN studies, defined patient populations — so that when one of these new treatments is ready to test, it can move quickly. Dr. Bloom has built consortia like this in other rare diseases. The estimate is one to two years to get the foundational work in place.
Individuals, including YOU, can play a direct role improving diagnosis and treatments in two ways. First, by joining the Facial Pain Association’s patient registry, which now has approximately 1,000 active participants. The registry helps researchers understand the real range of TN, recruit appropriately for clinical trials, and develop better questionnaires and outcome measures.
Second, by sharing the work being done at the FPRF and the FPA with your clinicians — many of whom, even neurologists and neurosurgeons in well-known institutions, may not be aware of the rapid progress being made.
The Facial Pain Research Foundation also committed during the meeting to a new communication initiative: producing summaries of the research presented at each annual symposium (this one is the first), sending them to the presenters for review, and publishing them through both FPRF and FPA newsletter channels and on the FPRF website. The goal is to make the research immediately accessible to individuals and caregivers, not buried in scientific journals.
Dan DiCaro, who lives with TN every day and chairs the Foundation’s Board, set the standard for what comes next at the closing panel: “We want to be a catalyst, an accelerator, removing roadblocks — and we want results.” That is what the individuals living with this disease are asking for. The science presented at this symposium suggests that, for the first time in decades, the field is in a position to deliver.
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