Pam’s New Year’s Resolution
Author’s Note: We received so many thank you notes for the information provided in our January newsletter we felt it important to share it to as broad a spectrum of readers as possible. Making it as a headline on our WebNewsPaper helps us in reaching that goal. You can help the information reach even further! Are you not receiving newsletters or know someone who would benefit from receiving them? Send me an email today at
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NEWSLETTER January 2015 Written By: Pamela Unverzart
IT’S JANUARY…THE MONTH OF NEW BEGINNINGS. I’ve stopped making a “New Year’s” resolution, because for me every night before my sleep aid lulls me away from pain and into the world of pain free dreams I begin the chant of resolutions and promises I make for myself. Tomorrow is my day for making all those resolutions come true.
Tomorrow I will wake up pain free and make my way outside to work in the garden I love so dearly. Tomorrow I’ll take the dog on a long walk and breathe in the fresh winter air. I’ll paint the deck and scrub the porch. Tomorrow I’ll write pages on my book that’s languished far too long unfinished and spend several hours at the computer answering emails and calling TN patients who need a boost to get through their day.
Regrettably, like so many of you, my night time tomorrow never truly arrives. Today begins with a cautious opening of my eyes and a quick mental status check of the pain level registering in my face. Often that status check is enough to push the memory of resolutions swiftly away. Resolve disappears as PAIN arrives with awakening and the need to go back to sleep will take precedence over everything else…sleep where the pain doesn’t live.
I once watched a newscast of a young girl that lived in horrible pain who was a beacon of strength in her short years here on earth, and something she wrote crosses my mind often upon waking now. She penned, “In my dreams I can fly, I don’t hurt and I don’t cry. So please, let me sleep.” I never imagined at the time I saw that newscast her poem would become my mantra when meeting the sun’s rising. It makes my heart ache to imagine it. But even more, it makes me angry that there are many of you that see yourselves in the same predicament.
It fills me with uncontrolled fury that no organization or research group prior to The Facial Pain Research Foundation (FPRF) considered looking for a cure for this disease that rips the very pleasure of life from so many. And with that anger voiced and out on the table, I must follow it with extreme thankfulness I can put the fury aside and shove forward. I can do so because I have a small, inside, behind-the-scenes look at the dedicated, hard push of research that’s going on through the funding of the FPRF. No one may have cared to look for a cure for trigeminal neuralgia and other facial pain neuropathic disorders prior to four years ago, but it IS being done today. Yes, it IS being done and moving at lightning speed across the globe. And 2014 brought us so far ahead of the game that I can finally – honestly -- hold out some hope in my heart that I WILL see that cure happen in my lifetime.
YES, 2014 BROUGHT SWEEPING LEAPS FORWARD ACROSS THE SPECTRUM OF OUR RESEARCH PROJECTS. The past year was particularly quiet for me while I shied away from my volunteer duties with the FPRF and struggled with a resurgence of TN pain, but the year was far from quiet for the Trustees and researchers heading the army on the battlefield of science and finding ways to fund the fight for a cure. Many hours of negotiations and burning of the midnight oil of other FPRF volunteers brought about success we dared even dream about four years ago. The accomplishments are numerous and would fill up many pages to list them all, so let me just… HIT A FEW OF THE BIGGEST HIGHLIGHTS OF THE YEAR for a moment. In 2014…
The Cilker family reached out with their philanthropic hearts and funded the FPRF’s Cilker Genetics Research Project with a whopping matching $500,000 grant. That matching gift brought out hundreds of similarly giving hearts (and as of this spring the match will be met)…these gifts making it possible to open all eight collection centers across the globe, finalize the collection of the initial 100 DNA samples and an additional 150, reaching the halfway mark in our collection of 500 samples. One hundred samples have already been examined for DNA analysis. As the next 400 samples are being put under the microscope, next steps are already being discussed on how the results will be used, with an eye on the end goal of putting the outcome of the study into practical application for the TN patient.
Dr. Lucia Notterpek finalized initial studies and her amazing results were published in the Journal of Neuroscience. Dr. Notterpek’s success with her approach that TN is thought to occur when the insulating myelin sheath of the trigeminal nerve is lost or damaged (demyelination) by the pulsations of an overlying blood vessel and the discovery of the role of a specific Schwann cell gene (peripheral myelin protein 22) in the development and maintenance of myelin breaks ground that reaches across the spectrum of diseases. Scientifically speaking, Dr. Notterpek’s results are beyond the imagination and successful to the point that the FPRF chose to fund her continuing research efforts above and beyond those funded by the NIH. The FPRF was not alone in realizing the impact of Dr. Notterpek’s studies. Publication caught the eye of another philanthropic family and the next full phase of research has been funded to the enormous tune of $276,403!
Dr. Ahn’s Pain Pathways studies at the McKnight Brain Institute completed initial phases with eye opening results. Dr. Ahn has recently been named Director of Research for Lily Pharmaceuticals, leaving the research in the extremely confident hands of pain researcher Dr. John Neubert and his team of experts. The initial imaging has identified the locations in the brain where the trigeminal pain is being experienced. The importance of identifying the brainstem nerve tracts responsible for activating cortical areas in TN patients cannot be overstated. Discovery of the relevant nerve tracts provides targets for treatments that can specifically block the pain of TN and eliminate or limit unwanted side effects because the treatment can be delivered locally and not systemically. While steps were underway at the FPRF to fund the next series of investigations, (now renamed “Mapping Towards a Cure/Identification of Neurophysiological Signature of Trigeminal Neuralgia Pain) another giving soul stepped up to the plate to make it a reality. Lynn McGraw of West Virginia sadly lost her brother, Scott, two years ago to the excruciating pain of TN that never let him rest. Learning first-hand why TN is nicknamed the Suicide Disease, she resolved to make something positive of his devastating loss and has quietly funded research in the last two years to the tune of over $70,000. After hearing of the Mapping research project, Lynn has pledged another $30,000 for 2015 to assist with the project AND $30,000 plus for 2016. Science continues to triumph.
Many of our long-time friends are familiar with Dr. Allan Basbaum’s success in his studies geared toward cell replacement therapy as a treatment for injury-induced neuropathic pain. After the FPRF’s initial seeding of his research, his achievements caught the attention of the NIH, which picked up continued funding. Dr. Basbaum’s findings continue to rocket forward at break-neck speed, but The Facial Pain Research Foundation believed his success could move much faster in the specific area of curing neuropathic facial pain. Toward that end, arrangements have been made to add additional funding to his project, assisting his laboratory’s move along ASAP in their research for a cure. Stay closely tuned this year as Dr. Basbaum breaks new ground. And if you haven’t visited the FPRF website to read up on all ofourscientific studies, visit today at http://www.facingfacialpain.org. There you can find specific details on Dr. Basbaum’s research, which remains truly revolutionary. We are thrilled to continue to be a part of it.
NEW CANADIAN FUNDRAISING OPPORTUNITIES It has been traditionally close to impossible for donors to donate to a charitable organization housed outside of their own country and receive a tax break for the donation. There is little we can do to change those laws for they are different across the world, but it hasn’t stopped us from researching ways around them. Last year we broke that boundary for our Canadian supporters. The University of Florida is now a recognized university under the Canadian Revenue Agency regulations. Because the FPRF has two on-going research projects being run through the McKnight Brain Institute at the University, should you wish to donate to research for a cure of TN and you’re a citizen of Canada, you can now make your checks payable to The University of Florida Foundation. Send them to the attention of Stephen Figueroa, Director of Development, UF McKnight Brain Institute, PO Box 100243, Gainesville, FL 32610. Make sure to put a note in the memo portion of your check reading “Facial Pain Research Foundation” and provide a name of the donor and a return address. The University of Florida will mail a tax credit letter directly to the person and address you provide. We continue to research how to assist other donors across the globe with the same issue and will update you as we find new ways to help you receive the credit deserved for your donations!
The FPRF is excitedly moving into 2015 with the year’s first large fundraiser, the Laugh Your Face Off evening of hilarity at the Laugh Factory in Chicago on January 15th. Hosted by Pat and Amy Tomasulo, the event will highlight many well-known comedians, and seats have already sold out except for a few standing room only tickets. Plans are in progress to make the video of the evening available to others for future fundraisers! Laugh Your Face Off is more than an evening filled with jokes and jokesters. This major event will bring much needed awareness to the plight of the TN patient and our fight for a cure so needed by people around the world!
I’ve merely skimmed the surface of the triumphs of 2014. So very many have stepped beyond what they felt capable to impact the field of study in order to bring a cure into reality. Every effort, every dollar has made an impact beyond words. What began as mere ripples of a raindrop in a puddle of possibility have become massive waves rushing to shore. YOU’VE made that difference. Your endurance through the pain and your continued care of those in pain will not be for naught. There is a cure around the corner. Visit our WebNewsPaper or call today to see how much further we can spread the ripple.
Always with you in my heart,
Director of Communications
The Facial Pain Research Foundation