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Third Biennial Facial Pain Research Foundation


International Consortium Meeting



On March 9-10, 2017 the Third Scientific Meeting of the Facial Pain Research Foundation will be held at the University of Florida Orthopedics and Sports Medicine Institute in Gainesville Florida.  Scientists from their world-wide laboratories will report their research progress to the Trustees of the Foundation.  This Meeting has enormous importance to approximately 400,000 trigeminal pain sufferers in the United States and Millions across the globe.  While the focus is on finding cures for trigeminal neuralgia and related neuropathic pain, this cutting edge research may extend to those who suffer from all nerve damage including multiple sclerosis, phantom nerve pain, and nerves damaged by radiation or chemotherapy.


It is important that this by “invitation only” Scientific Meeting be held in a quiet private location away from the main-stream media.  The international consortium of scientists work in a synergistic fashion to assist each other in moving their research projects to fruition.  It is the only “team” of scientists in the World working together to find the cures for trigeminal neuralgia and related neuropathic pain.  They will be sharing with one another the progress they are making in a supportive and confidential environment and brainstorm the directions the research is going and how they and the Foundation Trustees can maximize their opportunities for success.  Each research project’s findings and progress must be kept confidential until progress announcements are made regarding clinical trials and the intellectual property rights must be protected.


Dr. Douglas Anderson, the Foundation’s Research Director will Chair the Meeting.  Some of the five research project presentations at the Meeting will include: Genes That Predispose to TN, Cell Replacement Therapy as a Treatment for Injury-induced Neuropathic Pain, Dysregulated Lipid Metabolism as a Disease Modifier in Peripheral Neuropathies, Mapping Towards a Cure-Identification of Neurophysiologic Signatures of Trigeminal Neuralgia Pain and Behavioral Data, and Revisiting the Cisternal Trigeminal Nerve Root for Targeting with Contemporary Tools. 


The Scientists and Foundation Trustees will be focused throughout the Meeting on how they can move forward more effectively to enhance progress toward cures and what additional resources will be needed to ensure success.


The Meeting Participants will include:  Dr. Marshall Devor, Israel, Dr. Ze’ev Seltzer, Canada, Dr. Joanna Zakrzewska, London, UK, Dr. Allan Basbaum, San Francisco, Dr. Kim Burchiel, Portland, Oregon, Dr. Scott Diehl, New Jersey, Dr. Lucia Notterpek, Gainesville FL, Dr. Catherine Bushnell, NIH, Dr. Mingzhou Ding, Gainesville FL, Dr. John Neubert, Gainesville FL,

Dr. Todd Golde, Gainesville, FL, Dr. Wolfgang Liedtke, Durham, NC, Dr. Robert Caudle, Gainesville, FL, Dr. Marcelo Febo, Gainesville, FL, Dr. Michael Pasternak, Gainesville,FL, Mike and Harriet Hirsch, Naples, FL, Dr. Douglas Anderson, Gainesville, FL, Roger Levy, Scottsdale, AZ, Elizabeth Cilker-Smith, Los Gatos, CA, Pat and Amy Tomasulo, Chicago, IL, Jean Raymond, Vermont, Jay Winer, Asheville, NC, Suzanne Grenell, Scottsdale, AZ., Tom and Susie Wasdin, Cocoa, FL, and Frank Skoviera, Tampa, FL.



Introducing Todd E. Golde, M.D., Ph.D.




Todd E. Golde, M.D., Ph.D., is currently the Director of the Center for Translational Research in Neurodegenerative Disease at University of Florida (Department of Neuroscience) where he directs a robust program of scientific discovery aimed at translating basic discoveries in neurodegenerative disease into diagnostics and treatments for patients. Dr. Golde has joined the Facial Pain Research Foundation research team as a Co-Investigator on the “In Search of a Cure: Finding the Brain Signature Centers that Cause Trigeminal Neuralgia”.  The project is directed by Dr. John Neubert at the University of Florida McKnight Brain Institute.  Dr’s Mingzhou Ding, Marcelo Febo, Robert Caudle are also Co-Investigators.  Dr. Andrew Ahn, Chief Scientific Officer Pain/Headache, Eli Lilly & Co. is a Consultant.  I asked Dr. Golde to write a brief descriptor of his work on this Foundation Research Project.--


Michael Pasternak, Ph.D., Trustee


Towards Gene Therapy for Trigeminal Neuralgia


By Todd E. Golde, M.D., Ph.D.


If one reads the entry for Trigeminal Neuralgia (TN) on Wikipedia, the second paragraph begins with the statement “Although TN is incurable, its symptoms can be managed ….” Many who suffer from chronic TN will endorse the first part of this statement, but likely strongly disagree that symptoms can always be managed; however, gene therapy-based approaches may in the not too distant future offer better outcomes for patients with TN whose symptoms are not well controlled by current standards of care. Indeed, leveraging the world-class expertise in gene therapy at UF, multiple UF faculty are teaming up to evaluate whether novel gene therapy approaches can translate into transformative new therapies for TN.  TN is a potentially ideal candidate for development of novel gene therapies targeting pain, given its focal nature and the accessibility of the trigeminal nerve to direct injection of vectors that will carry genetic elements into the affected nerves.  Drs. Neubert, Caudle, Levites and Golde have already teamed up to show that in rodent models using gene therapy vectors already available, one can easily deliver genes selectively and extremely efficiently  to the trigeminal nerve. Notably, once delivered to the nerve cell, the genetic material within the gene therapy vector is stable. Thus, a single treatment could provide a lifetime of relief.


Although the UF teams’ studies are in very early stages, all involved in the project are excited and optimistic that they can develop a road map that will lead to a more effective therapy for chronic severe TN. Their next step is to see whether one can silence pain signaling in the trigeminal nerve following gene therapy. Such proof of concept studies are already underway. In these studies the team will deliver engineered proteins that can either induce or blunt pain responses in the trigeminal nerve. The engineered proteins that are being used respond to a modified drug in a way that either silences neuronal firing or enhances it. Thus, once delivered to the nerve cells, the response of that cell can be modulated and the team can see if the rodent’s response to facial pain can be blunted or enhanced.


If these critical experiments are successful, the next steps will be to develop a gene therapy that is potentially translatable to the human studies. The engineered proteins used in the proof of concept studies currently underway cannot be used in humans; however, one of the real advantages of the paradigms the UF team is establishing is that multiple different approaches and targets can be rapidly evaluated. Especially intriguing is the potential ability to use new gene editing tools developed by UF faculty member Dr. Edgardo Rodriguez to permanently delete a key protein involved in pain signaling within the trigeminal nerve. Such an approach might spare other important functions of the trigeminal nerve while selectively blocking pain signaling. Ultimately, the investigators involved believe that this highly targeted approach can overcome many of the problems associated with traditional  pharmacological based approaches to pain and  actually lead to markedly improved outcomes or even cures  for TN and other focal chronic pain syndromes.






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The Facial Pain Research Foundation

2653 SW 87th Drive, Suite A

Gainesville FL 32608-9313




In backing the scientists



One Hour of Research Costs $125.00

Success in answering critical questions about the role of genes in TN and other

nerve-related facial pains relies on private support. Here are ways in which donors

at all levels can join The Facial Pain Research Foundation in finding a solution:

  • Support full expenses of one patient      in the study:     $1,770
  • Pay for the genotyping of one research      participant:    1,100
  • Help with the phenotyping costs for      one participant:     600
  • DNA extraction from one person’s      saliva samples           40
  • Pay for saliva kit & shipping cost      for one participant      30


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