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First Report

Fifth Science Meeting At

University Of Florida Orthopaedics & Sports Medicine Institute

Gainesville FL


 Kim Burchiel, M.D., F.A.C.S 

The Facial Pain Research Foundation convened its Fifth Scientific Meeting in Gainesville Florida March 7-8, 2019.  The FPRF has assembled a group of world-class investigators as a consortium to find a cure for Trigeminal Neuralgia.  Clinicians and scientists from the US, England, Canada, and Israel were on site, to lend their perspectives on the state of research on TN.  The agenda was ambitious, but the science and discussions lived up to the promise that we are closing in on the new knowledge that will help us find the cure.  Many new ideas were presented and as is true of high functioning groups, some of the best insights were developed during the dinners and social hours after the formal meeting. 

I will summarize some of the exciting concepts discussed at the scientific sessions, by topic.  I present not so much as a full representation of the work that is currently underway, but as an indication of the high-level science that is being devoted to finding a cure for TN.  The conference commenced with discussions of FPRF funded research, and related investigations, of which I am most familiar.

 Scott Diehl, Ze’ve Seltzer, and Kim Burchiel presented the latest on their project “Genes That Predispose to TN”.

 Kim Burchiel from Oregon Health & Science University discussed new insights into the origins of TN, which relate to different populations of patients with TN. Data is emerging that younger patients, particularly females, develop TN without the requirement for neurovascular compression (NVC) of the nerve.  Older patients do frequently have NVC, and their prognosis from MVD is directly related to the severity of that compression.  The size of the skull compartment that houses the trigeminal nerve (posterior fossa) seems also to be directly related to the incidence of NVC.  This new knowledge will help us direct our genetic search.

Scott Diehl from Rutgers University reviewed the latest analysis of the genetic work on TN. A number of genes are now coming into focus, all of which appear to be relevant to the development, or function, of nerves.  Now that we have identified candidate genes, the next step is to “sequence” these genes to determine if the preliminary findings stand up, and to find the exact mutations in these candidate genes.  The hope is that soon we will be able to determine the function of these genes to either discover or develop new drugs for TN, or even replace defective genes with “gene therapy”. Ze’ve Seltzer from the University of Toronto gave a broad overview of the role of genetics in the development of neuropathic pain, and how findings from his studies on phantom limb pain can provide insights into the genes that predispose to TN. Some preliminary data was presented which suggests that this strategy of comparison of large data sets from patients with neuropathic pain may well provide clues to the origins of TN. 

Allen Basbaum from the University of California, San Francisco discussed his work to identify novel gene targets in pain processing, what he termed the "dark genes.”

Lucia Notterpek from the University of Florida presented her work on dysregulated lipid metabolism as a disease modifier in peripheral neuropathies.

Wolfgang Liedtke from Duke University discussed his work on the Trigeminal nerve root as a rational target for safe and effective treatment of trigeminal nerve pain.

Cory Nichols from Neurona, described the work of his company targeted on developing a human GABAergic interneuron cell therapy to treat refractory epilepsy and neuropathic pain disorders.

The second conference day was devoted to a range of new and innovative potential therapies for TN.

Todd Golde from the University of Florida talked about the possibility of gene therapy for Trigeminal Neuralgia.

Joanna Zakrzewska from the University of London, discussed what happens to our patients with TN over time.

John Neubert from the University of Florida provided an overview of his FPRF project on identifying the neurophysiologic signatures of trigeminal neuralgia pain. 

Mingzhou Ding from the University of Florida related his findings on trigeminal neuralgia and multimodal neuroimaging.

Rob Caudle from the University of Florida presented his findings on a approach to ending neuropathic pain with a combination of substances for blocking pain transmission. A novel and unique approach using old compounds to inhibit neuropathic pain.

Allan Basbaum presented an update on the work of a company he is affiliated with which is working on a genetic “switch” that can potentially selectively turn off pain generation in the trigeminal system, using a benign oral drug.

Mike Iadarola from NIH expanded on the use of a compound to potentially control facial pain and plans to test for ending TN and related neuropathic pain.

Jerry Krbec concluded the day with a discussion on funding opportunities from other sources to support the work of the FPRF.

What I would like to leave you with is the sense of the awe I have for the FPRF, having taken on this mission of finding a cure for TN.  Through hard volunteer work, diligent fund raising, and the assembling of scientific expertise, the FPRF has accomplished something which in my experience is very unique.  The FPRF scientific consortium has become the “place to be” in the neuroscience of TN.  Groundbreaking work is being accomplished, and I came away from this meeting with a sense of optimism that we are close to an understanding of how we may cure TN.  In fact, the most encouraging aspect of this meeting was, to me, how many different avenues of new knowledge are opening up.  I am proud to be part of this work, and am excited to see the next levels of understanding that await!

 Kim Burchiel, M.D., F.A.C.S



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