EndTN is a group devoted to providing information, support and awareness about trigeminal neuralgia to a world-wide audience. Check out their blog at endtn.blogspot.co.uk
Their Questions to The Facial Pain Research Foundation are answered
BY MICHAEL PASTERNAK, PH.D.
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.
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!
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. Lotterpek: 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. Dr. Joanna Zakrzewska 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”.
We understand how much the Foundation really needs financial help. As charitable donations are tax deductible, 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 www.facingfacialpain.org...others 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.
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.