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Research Update


More Than A DNA-Genetics Project


By Michael Pasternak


I have received numerous emails regarding the recent WebNewspaper article and report about the Foundation’s DNA/Genetics Research Project.  I have also received a continuous flow of questions about the progress of other Foundation research projects. Each April, Dr. Douglas Anderson prepares a report to share with everyone and will do so in 2018. But, because of the large numbers of requests here is a brief update which will create even more questions from you, our wonderful supporters. And yes, the goal of The Facial Pain Research Foundation has been to find cures by the end of 2020 and it still is!  As soon as any of the projects move into human studies we plan on informing everyone.


First, the Genetics/DNA Project:  We now have a team of scientists who have worked hard using their unique skills and understandings and have presented a report to our Trustees and asked to go forward to replicate the study during the next year to prove that what they have found are really the genes that will lead us to finding the cures. We have put in print their non-technical report in the WebNewspaper.  We will NOT report ALL that we know until the study is replicated and proves what we know.  Yes, not everything we know is in the non-technical report.  Our scientists have seen far too many research journal articles that prematurely announced findings that could not be replicated.  I assure you that the Foundation is not about to spend $325,000 in the next year to prove that we have found the genes responsible for trigeminal neuralgia if our scientific team didn’t believe we are on the edge of reporting great findings.


The money to pay for our Foundation’s research has great character and integrity.  It comes from thousands of Volunteers who have been involved in grass-roots efforts to find the cures.

We are only funding research that is novel and unique, the investigators responsible for each project are among the leading researchers in their respective fields, and there is significant diversification among the projects…and we believe that they will succeed.


Second, Researching Stem Cell Replacement Theory:  This is one of the primary research approaches targeted and supported by the FPRF since its inception.  This unique therapeutic approach involves the transplanting cells that produce pain inhibitory neurotransmitter(s) that can suppress the devastating pain of TN.  The chief Investigator of this approach is Allan Basbaum at the University of California San Francisco.  These studies have developed to the extent that they contributed to the formation of several new companies that have developed  the concept of transplantation of cells that produce inhibitory neurotransmitters in animals and are being developed to be used in humans for the management of different neurological conditions that appear to arise from loss of inhibition with an emphasis on trigeminal neuralgia.  Elizabeth Cilker-Smith and I have been invited to visit with the 34 scientists working at Neurona, Inc in San Francisco in a few weeks to discuss their progress and we will also meet with Dr. Basbaum and the scientific team at CODA to get further progress reports. Frankly, I’m expecting excellent progress.


Third, Investigating Peripheral Nerve Myelin:  “They are working on making myelin.”  They are also trying to develop the necessary processes that would assist people in strengthening and repairing the damaged myelin. An intact myelin sheath is necessary for the proper functioning of the nervous system. Dr. Lucia Notterpek and her team’s overall goal is to define specific protein-lipid interactions, with a focus on PMP22, and cholesterol in the establishment and maintenance of lipid membrane domains in the peripheral myelin.  In the absence of PMP22, myelin is prone to compression-induced damage leading to localized myelin injury.  For completing the aims of the project they are using cultured cells and nerves from normal and PMP22-deficient mice and engineered molecular constructs.  It is exciting to visit Dr. Notterpek’s lab and view the activity in the microscopes.  This is hard basic research.


Fourth, Mapping Toward A Cure: Dr. John Neubert, the Lead Investigator at the McKnight Brain Institute and is team has been very active in recruiting volunteers to have their brains scanned to investigate the cause of TN in both animals and humans. Knowing where the pain in the brain is occurring and exploring the compounds and other substances that can block the

pain pathways to the brain signature centers will be a great achievement.  We need over 50 volunteers to prove scientifically the imaging aspects and the project is well past the 50 percent mark.  More volunteers are scheduled for the next few weeks and we will make another announcement for additional Volunteers in mid-March.  While the imaging of humans continues there is also animal imaging and substance testing in the laboratory.  The goal is to complete the imaging before the end of 2018.


Fifth, Delivering Compounds That Can Eliminate The Pain:  or a Dr. Wolfgang Liedtke calls it
“Not Science Fiction”

In a “nutshell” what we have is a most unusual way to deliver substances (cells) at the base of the brain that stops neuropathic pain from entering the brainstem.!! 


Dr. Liedtke has submitted his most recent report to the Foundation and has made a request for continuing the research that would lead to stopping the pain.  We are unable to share his findings with the public right now…but it has great merit.  Sometimes research is unique and proprietary.  State tuned!


Sixth, Gene Therapy to target pain:  The Facial Pain Research Foundation’s newest

research project launched in the Fall of 2017 with the goal to be completed in 2-21/2 years.

Dr. Todd Golde and his research team (google Todd Golde!) have added new professionals to the lab and launched to project to find the cures. 


Please feel free to call me regarding our research progress.

Thank you for your great support and interest in our research.


Michael Pasternak, Ph.D., Founding Trustee

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