Monday, 25 November 2013

Facial Pain Research Foundation

When living with Trigeminal Neuralgia or any other facial pain, one thing is extra important - hope. We all need hope for a better future.

The Facial Pain Research Foundation is trying to give people just that. They believe there will be a cure by at least 2020.

Michael Pasternak PhD, one of the Foundation's founding trustees, has answered a few questions for us.

We hope that his answers can possibly give hope to people living with facial pain and their families.

1.  End Trigeminal Neuralgia is global....and we know that everyone worldwide needs hope of a cure for TN. Can you tell us a little bit about the Foundation - are you just based in the USA, or are there people working in other countries too?
Finding a cure for trigeminal neuralgia, the most painful disorder known to humans, is the mission of The Facial Pain Research Foundation. Its founders aim to reach the goal within the decade of 2011-2020, while also developing therapies to permanently stop other nerve-generated facial pains and diseases. The Foundation is the brainchild of seven professionals across the United States, who are creating the first international force of scientists to work together to cure an ancient, but poorly understood disease. Finding a cure will restore pain-free life to millions of men, women and children around the world, who are stricken by repeated lightning-like shocks of facial pain, the hallmark of trigeminal neuralgia. A simple cool breeze across the face, a slight touch or even a kiss on the cheek can trigger shooting pains that drive victims to their knees and may last a lifetime.
To conquer the problem within ten years, the Foundation has formed an international consortium of eminent scientists, starting at the University of Florida’s McKnight Brain Institute and the University of California San Francisco, to conduct studies aimed at translation from laboratory to patient. Participating scientists will report outcomes at Foundation conferences and public forums. In the process, they will expand public awareness of what has been a global silent epidemic of facial pain. Currently research projects across the globe involving neuroscientists and genetic specialists from several states across the United States to England and as far away as Israel as we stretch the horizon in search for a cure.

2.  Do you really think that there could be a cure for TN by 2020?

Yes! The Foundation’s Scientists are at work in laboratories as I answer your question. They tell us this 2020 goal is real and achievable.  Before we established this Foundation, no one had ever asked these eminent neuroscientists to apply their skills and understandings to finding cures for TN and related neuropathic pain disorders. In March, 2013 we brought all of the Foundation’s scientists together for the first time in Naples, Florida to discuss their research and their progress.  We continually receive reports on their work. We will continue to seek additional scientists to assist us in our efforts and our goal to achieve a cure within 10 years remains strong!

3.  We understand that you are working on 4 projects, can you give us a brief idea what each one is?

  • San Francisco study
Dr. Basbaum: Nationally known neurobiologist Allan Basbaum, Ph.D., at the University of California San Francisco is focusing on one known cause: the loss of chemical mediators that normally inhibit the transmission of pain signals to the brain. Basbaum is evaluating a unique approach, involving nerve cell transplants, which ultimately may be helpful in treating the persistent electrical shock-like facial pain of trigeminal neuralgia and similar nerve-related facial pain disorders. He explains, “These neuropathic facial pain conditions are often treated with medications designed to suppress the hyperactivity that occurs. Many of these drugs mimic the inhibitory neurotransmitters that normally keep nerves calm. The problem is that although these drugs provide symptomatic relief, they also affect the entire brain and can cause unpleasant side effects from drowsiness to memory loss.” Basbaum, who has devoted his entire career to pain research, aims to find a way to restore that circuitry. His UCSF team includes scientists who have genetically engineered mice so that it is possible to monitor the integration of the transplanted cells, as well as developmental neurobiologists who study how inhibitory neurons grow after transplantation and how to make them thrive.
  • Florida studies :
Dr. Notterpek: One known culprit behind the piercing, repetitive pain of trigeminal neuralgia is damage to myelin, the waxy coating that insulates nerve fibers against electrical signals that are transmitted from cell to cell. Loss of myelin on the trigeminal nerve causes a short circuit that result in facial pain. To define how myelin defects cause havoc in the nervous system, University of Florida Neuroscience Professor Lucia Notterpek, Ph.D., is leading studies of myelin biology and disease. She is addressing basic questions about healthy myelin, which is vital to the normal rapid movement of electrical impulses through the nerve pathways, and about various nerve disorders, including hereditary demyelinating neuropathies, which result from myelin defects or deficiency. She seeks information that will aid the development of ways to repair or rebuild myelin in order to cure trigeminal neuralgia and other demyelinating diseases.

Dr. Ahn: The clinical picture of persistent pain strongly suggests that the chronic pain of TN can cause long-lasting abnormalities within the brain. Better insight into this brain abnormality could provide important and new insights into our understanding of TN, and could enhance our ability to improve upon existing therapies or design new, more effective approaches. Modern imaging techniques have produced remarkable insights into a range of neurological conditions. However, only a few preliminary studies have been dedicated to understanding the brain abnormalities associated with TN. And there are no studies that have explored the possibility that the pain of TN leads to long-term changes in the brain that perpetuate chronic TN pain. This grant (from The Facial Pain Research Foundation) provides support for the initial stages of one such project, whose goal is to draw a neural signature, or “map” of TN pain. If successful, these experiments will lead to new fundamental insights into the neurobiology of TN. It is anticipated that this new knowledge will enhance our ability to identify novel targets for effective TN therapy.” 

  • International Research Project: Unlocking DNA to Find a Cure
Imagine unlocking the mysteries of DNA that are so extraordinary and then applying those learning’s to finding a cure for the worst pain known to humankind. Our DNA functions as the building blocks, or blue prints of life.  We all carry these building blocks within every cell of our body.   For many years patients have asked themselves and their doctors “why me? Why did I get this awful painful condition called trigeminal neuralgia?...Why do I suffer so and others don’t understand...why do I feel like I could simply die?” 
The Facial Pain Research Foundation’s first international research project to find a cure is underway and it seeks to discover the answers to “Why Me?” and lead scientists to developing a cure. of London England, the Foundation’s International Research Coordinator, asked Dr. Marshall Devor in March 2012 to prepare a research project proposal to seek a cure for TN and present it to the Foundation.   The three Principal Investigators of the project are Dr. Marshall Devor, Dr. Kim Burchiel and Dr. Ze’ve Seltzer.
The team of international scientists is led by Principal Investigator pain research pioneer Dr. Marshall Devor of the Hebrew University of Jerusalem, Israel.  The award winning scientist has had an outstanding career in pain research. He has contributed an outstanding body of research, authoring several hundred papers over 40 years and has been been described as one of those “who view excellence as a way of life and the fulfillment of human potential as essential to creating a better world for future generations.”
Dr. Kim Burchiel is the Chairman of the Department of Neurological Surgery at the Oregon Health & Science University in Portland, Oregon. Burchiel has been a long time member of the TNA Medical Advisory Committee and performed hundreds of TN surgeries. A successful researcher, he has been a national leader in the treatment of orofacial pains including TN. The first step of the research project, phenotyping and DNA collection, will be the responsibility of Professor Burchiel at OHSU. He is a leading authority in the phenotyping of facial pain conditions and author of the most widely accepted TN classification scheme. Dr. Burchiel has said: “this research project could be the most important pain study ever attempted” and he is very hopeful that it will lead to a cure for TN and related neuropathic pain.  
Dr. Ze’ev Seltzer, Professor of Genetics at The University of Toronto, Canada is also an award winning scientist. He has dedicated his career to the study of pain. Seltzer says “ I am looking forward to be a Co-Principal Investigator in the  TN project, bringing 35 years of studying the neurobiology of pain.” Having had many competitive grants and honors he has an outstanding track record of productivity in the field of pain and pain genetics. Seltzer also says “The goal to find a cure is achievable...our best salvation may come from genetics”.

4.  All sounds good for classic TN, what about Atypical pain?  

The Foundation has not limited its scientific efforts to only classical TN.  Our Foundation’s Charter clearly states that the goal of the Foundation is to cure trigeminal neuralgia and related neuropathic pain.  Our Research Director, Dr. Doug Anderson, and our scientists have discussed this matter thoroughly.  They believe that when they can “fix” trigeminal neuralgia through the various approaches they are researching it would lead them to cures for what has historically been called atypical TN and related neuropathic pain conditions.  Dr. Basbaum openly states that when he can fix the trigeminal nerve he will also be able to apply that science to fixing atypical pain and other nerve disorders, including phantom nerve pain and nerves that have been damaged by chemotherapy and additional nerve related conditions.  Dr. Seltzer has told us that when we find the genes that are responsible for classical TN it is only the beginning.  The scientific processes being followed should lead to finding cures for both related conditions and other diseases.  Our International Consortium of Scientists is primarily focused on TN and related conditions, but they also understand the potential of what they are doing for other human disorders and diseases.  If damaged myelin or brain pathways are responsible for atypical pain conditions, the research will be applied to creating cures. That is our Foundation’s goal.  In addition, it is important to note that all of our research projects have been started with the understanding that they lead to cures before the end of the year 2020.  The Foundation scientists are committed to moving forward with blazing speed.

5.  We understand how much the Foundation really needs financial help. As charitable donations have different tax benefits from country to country, is there a way for people to donate from countries outside USA? The tax deductible rules apply within each country, normally only for charities within that country. So it could prove more difficult for people to donate from overseas.

Each country has unique requirements regarding tax deductions for charitable donations and some offer no deductions.  We would certainly assist international donors in any way possible to receive deductions for their contributions. Since we have a center in London that will soon be collecting DNA for our genetics research we could, if requested, attempt to create an opportunity for those donations to remain in the UK for our research efforts in London.  We presently have a Foundation Volunteer selling greeting cards in England to raise funds for our Foundation. 
An example of International tax differences is that Canadians can donate to Canadian government approved (prescribed) Medical Research Universities in the U.S.A. where our Foundation’s research is occurring and receive tax deductions for their donations. 
The Foundation is very interested in working with people from any country to assist them in creating opportunities for them to assist us with our international research programs and receive the maximum tax benefits available. This is the very first chance people have to contribute to a Research Foundation to end TN and related pain.  People world-wide are making donations.  Hopefully more will do so regardless of whether they get a tax deduction or not.  
The Foundation has been created as a result of the Medical and Governmental communities not organizing to find cures for neuropathic pain. For many years some treatments and medications worked for some patients and not for others.  The Foundation is dedicated to finding cures...fix the problems. Each of our research projects have received funding from The Foundation. The money has been donated by people for the purpose of finding cures.  We presently receive donations from people throughout the world, some through the use of credit cards on our World Famous WebNewsPaper (“The Afternoon Edition”) at send checks to our Gainesville, Florida office (The Facial Pain Research Foundation, 2653 SW 87th Drive, Suite A, Gainesville, Fl 32608-9313.) We provide every donor with a thank you letter that serves as a contribution receipt for their donations. Internationally, the letters are sent by email to save on postage costs. 

6.  Finally, very often people donate to charities, to discover that so much money is paid to high salaried admin staff. It puts people off. Can you tell us if it's like that with the Foundation?  

The Facial Pain Research Foundation is a totally Volunteer Foundation...Over 98% of the money collected goes directly to our Research Projects.  The Foundation has no salaried administrative staff.  We have no endowments or property serviced.  Our total monthly costs for rent and telephone are $230.33.  This cost is a requirement that a Foundation in Florida must have - a permanent address and telephone - so we use a family member’s office address and telephone with calls forwarded to our Volunteer Communications Director, Pam Unverzart.  Our largest costs are related to credit card and PayPal fees. (generally about 2%) Even our postage stamps and envelopes are donated.  Again, when someone donates funds to our non-profit 501 C 3 organization approximately 98% goes directly to our research programs.  

The Foundation has a monthly mini-newsletter to keep people up to date. If people wish to be added to the distribution list, please contact Pam at or drop an email to

We would like to thank Michael for taking the time to answer our questions and we wish the Foundation luck with their hopes of bringing a better future to people living with facial pain.

We welcome any comments or questions. Please write in the comment box below, or contact us at our awareness page End Trigeminal Neuralgia


  1. Taking this article to a researcher tomorrow. I will be asking him to join the fight. Richard Pellegrino in Little Rock, AR. He has done studies in MS research for many years and is lead researcher over Arkansas Research Center for Medical Sciences and research at AR Baptist Hospital. He was my neurologist for 4 years. And I must say to be so brilliant and still have such a wonderful personality I have found to be rare among neuro doctors.

    1. Please do let us know how you get on.

      Thank you for taking the time to comment.

  2. I have an interesting situation that I am wondering if anyone else has dealt with. I am so glad that this research is being done. I have glasspharyngeal neuralgia - over 15 years. I was put on twynsta for high blood pressure. Within 2 days, I was free of pain - the first time in 15 years. I was taking 800 mg of tegretol a day and still having pain. I am now down to 300 mg a day and no pain. Is there something in the drug that helps? I would love to hear of others who have had this experience or if research is being done on this BP med. Thanks for all the work that everyone does. It has been a lifesaver for me over the years to know that I am not alone.

    1. Apologies for not replying sooner.
      TN can go into remission sometimes, but as far as your BP med, I am afraid I don't know. It is fantastic if it has helped you. I will copy your message into our support group, as, who knows, this could help someone else.
      Thank you for commenting.

  3. How do you see if you qualify to participate in one of these studies? I'm an identical twin and we both have TN.

  4. That is interesting. The twynista would lower the heart rate and blood pressure, and it would relax and dilate the arteries of the head plus relax muscles... Perhaps it relieved compression for you just enough to stop the pain. How nice!

  5. I have had tn for 15 years, my first procedure was gamma knife which totally eradicated the melinun by mistake, which left me in horrible pain. A year later the same Neurosurgen did MVD and removed 1 blood vessel off the nerve. That was in Orlando Fl. Then I went to Pittsburgh to have 4 more blood vessels removed and a Teflon shield implanted, then 2 years later 3 glysiseral rysotomys with relief from 2. In pain still. I need help, I've had every facial procedure done only to make it worse. I also have facial spasams that trigger the nerve. I'm on 15 meds a day for some relief. If you need a vollentior, I live in Orlando Fl.


Thank you for your comments.