The March 2015 Naples Science Meeting
Reported by Elizabeth Cilker Smith
West Coast Coordinator for the Facial Pain Research Foundation
Sitting around a large parquet conference table on a sunny March morning in Naples, Florida were an artist who has commissions for large fountains in Israel, a UCLA graduate and a mother of two high school daughters - one applying to colleges in the fall, a world traveler whose favorite country is Turkey, an avid hiker just returning from Peru, a tri-athlete whose son holds the tennis junior state championship, a grower of olives, grapes and almonds, and a member of the United Kingdom’s Royal Society.
As fascinating as each of these individuals are, what brought them from around the world to lean over this table to share excited challenges, new insights and passionate dialogue was one simple but profound question: “How can we stop the pain?”
Each of these people is an expert in individual areas of pain research. Each one was reporting on their “piece of the puzzle” searching to find the cause and cure to the world’s most terrific pain, Trigeminal Neuralgia. To be invited to sit in the same room as these researchers reported the current status of their projects is an honor at any time.
But when the subject is familiar and the experience is personal, I found myself riveted.
Even as I write this, my pulse beats faster with the hope provided by the researchers’ tireless work. For six years I suffered from Trigeminal Neuralgia. The pain started with an innocuous tic and grew to be intolerable. The fear, depression, helplessness and drug dependency snuck into my days. It changed my life and worried my family.
Finally, after a successful micro-vascular decompression surgery by Dr. John Alksne in 2001, I felt I had to make a decision: to turn away from this torturous experience or to turn toward it, walking through the fear to try to help others. As many of you know, the easy way out often feels like a relief, an escape. But my father always said, “If you borrow something, give it back in better shape.”
It may seem crazy, but my TN world now appears “borrowed” and I long to change the lives of other sufferers. Of course I am fully aware of how incredibly fortunate I am to be pain free for these past years. And the thought, “Why me?” has played in my mind and heart as I hear and read so many of your TN stories.
As West Coast Coordinator for The Facial Pain Research Foundation (FPRF), I was invited to listen to the researchers the foundation is supporting. I’d like to share with you a bit of what I heard in each presenter’s own words and in some instances what the conference meant to them:
Dr. Allan Basbaum, University of California at San Francisco, reviewed results of cell transplant studies in models of neuropathic pain in mice.
His laboratory has now demonstrated that the transplants are effective in neuropathic pain models following both traumatic nerve injury as well as chemotherapy-induced mechanical and thermal hypersensitivity. Soon information from models of facial pain can hopefully be extrapolated to facial pain conditions that would include Trigeminal Neuralgia. An avid discussion followed.
Dr. Lucia Notterpek, McKnight Brain Institute, University of Florida, discussed studies concerning myelin biology and its relationship to nerve damage in neuropathies which include the pathobiology of Trigeminal Neuralgia.
Why myelin in certain individuals is prone to degeneration is unclear, but genetic and metabolic factors may play a role. Myelin is enriched in specific lipids, including cholesterol.
The Notterpek lab uses mice whose nerves are genetically deficient in myelin lipids, which affords them the opportunity to study why cholesterol is critical for healthy myelin. Current experiments may allow for the design of novel and effective therapies for disorders such as TN that involve myelin damage.
Dr. John K. Neubert and Dr. Mingzhou Ding, McKnight Brain Institute, University of Florida, spoke on their project to indentify neurophysiologic signatures of Trigeminal Neuralgia pain. The primary goal is to acquire a neural signature or “map” of the brain in individuals with TN pain. This study is being carried out simultaneously in animals and in humans.
Professor Zakrzewska, Eastman Dental Hospital, London, gave a talk on diagnosis of Trigeminal Neuralgia. Although it seems that this is a relatively straightforward diagnosis, it is not the case. Patients describe a wide range of symptoms. It is very important that as much detail as possible be collected on these patients for the genetics study. This collection process is called phenotyping.
Another talk by Professor Zakrzewska described the preliminary results from a new drug for management of Trigeminal Neuralgia. The news is encouraging and further studies in USA and Europe are being planned.
Professor “Zak” stated that the meeting gave her a “superb opportunity to exchange information with other scientists and clinicians that will help further understand the complexity of Trigeminal Neuralgia.”
Dr. Ze’ev Seltzer, University of Toronto Center for the Study of Pain, presented the particulars of his and Dr. Zakrzewska’s set of questionnaires that were sent to all participants of the genetic study. These questionnaires include details such as where in the face/mouth the pain is felt; how it is described; how often do these attacks appear; how long do they last, etc.
The data provided will be used as follows: (1) to deepen familiarity with the expression of TN in our large study group that is currently aimed to include 1,000 patients, the largest of its kind to date; and (2) to extract traits associated with genotypes that identify genetic variants at risk for developing Trigeminal Neuralgia.
Dr. Scott Diehl, Rutgers University, New Jersey, presented early results for the genetic study team including a genome analysis of 94 TN1 patients. This was a part of a total sample of 500 patients now being recruited with support provided by the Foundation.
He cautioned that we need to wait for the complete analysis before drawing any solid conclusions. However one gene region suggested by early data appears interesting because the gene is known to be important for nerve development.
Dr. Diehl emphasized the importance of large numbers of subjects and endorsed the recommendation for increasing our sample to 1,000 patients.
Dr. Marshall Devor, Hebrew University, Jerusalem, is project coordinator of the project to find the genes that predispose to Trigeminal Neuralgia. He and Dr. Kim Burchell, Oregon Health and Science University, discussed the current collection of 500 TN patients DNA from around the world.
In Dr. Burchell’s words, “The Meeting was a rare opportunity to spend time with world leaders in Facial Pain Research. The environment of discussion, inquiry and innovation was personally very invigorating. We have made amazing progress towards identifying the genes that predispose individuals to Trigeminal Neuralgia in a very short time.
We have done this in an efficient and cost–effective manner since the three-legged stool of our research effort is based on scientific curiosity, volunteerism, and a motivated organization, The Facial Pain Research Foundation. It is an honor to participate in this effort, and it is a model of what a dedicated team can accomplish.”
There were other participants at the Scientific Meeting. For a comprehensive review of the projects and their goals please read Dr. Doug Anderson’s fascinating March 2015 Report to the Board of The Facial Pain Research Foundation on the Research Foundation’s Web Newspaper at www.facingfacialpain.org.
The message from the Meeting is urgent and clear. The researchers cannot sit at the table alone. We must all sit at the table – each of us who has this terrible disease and lean forward with our talents, interests but most of all our passion. If we don’t now, who will?
The researchers are unable to do it without our cry for the impossible, our stories, and our dollars. We press them to hurry and find the answer to “How do we stop the Pain?”
So here’s the deal, it’s us. We must step up and swing to hope for a homerun…(excuse the spring analogy). To not support our team, to not ask our family and friends to come to the game, is to strike out, to lose. Others can’t remember “Trigeminal Neuralgia” let alone pronounce it. We own this name, this hidden pain. It’s ours; it is us!
Please dream with me. Dare to be the difference in funding research around the world through the foundation to end this dreadful disease. In so doing, we use this challenge, this fight, as a vehicle to help eliminate world wide chronic – neuropathic pain.
My conclusion is simple, honest, but difficult to ask. My family, the Cilker family, in 2014 gave $500,000 to The Facial Pain Research Foundation as a matching grant. In less than 12 months hundreds of donors matched that grant and raised the amount for research to one million dollars.
Another matching grant of $500,000 is needed to reach a goal of two million dollars.
We must complete the TN 1000 DNA collection samples and assist our researchers as they do comprehensive work on our behalf. Most of their work is voluntary; their supporting institutions do not fund it. Our money goes directly to the laboratories to push on, in every minutiae detail, to find a cure.
Do spend a moment and seriously consider how to fulfill this request.
Thank you so much for allowing me to share my experience, my thoughts and for your time.
Elizabeth Cilker Smith