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Mini Newsletter June 2015


Reprinted by Popular Request



By Amy Tomasulo



I am very excited to once again bring you the latest from the Facial Pain Research Foundation. This month, we have exciting information to share regarding one of our research projects. I was so inspired by the latest update, that it became the final push I needed to participate myself.  The research project I am referring to is:


Finding the Genes that Predispose to Trigeminal Neuralgia


After my last newsletter, I asked Michael Pasternak for specific information about the science behind some of our research projects- the science we are waiting on for a cure. Admittedly, much of it is way beyond my understanding, but there a few things I’ve learned that I think I can intelligently explain to all of you.


 The genetics study, broken down very simply, suggests that if a room full of people each had a vascular compression on the trigeminal nerve, not all of them will experience pain. As a matter of fact, only 1 or 2 will experience the pain of trigeminal neuralgia. Similarly, in a room full of people without compression, 1 or 2 may still experience TN pain. WHY? The scientists leading this study believe it’s because some people are genetically predisposed to TN pain. (You can hear from them directly later in this newsletter, as I’ve included their research project synopsis).


And here is how we can help them- the scientists need our DNA. Neat, right? Something we can do to help the actual science! We raise funds, volunteer, spread awareness- ALL of which are unbelievably important.  But now we essentially get to work alongside the scientists (albeit for only about ten minutes). It’s FREE, it’s quick, it’s easy, and with 9 collection centers internationally, there’s a good chance you live near one. If you do, it’s imperative that you participate, because they currently don’t have enough samples to complete their research.


I wanted to share my experience donating, in case you’re still not sure if you have the time (which I thought a few times), or if you’re still apprehensive. I live in Chicago, and luckily the University of Illinois at Chicago is one of the collection centers. Dr. Konstantin Slavin (an acclaimed neurosurgeon, and friend of the FPRF) and his office are spearheading things here. Naturally, I wasn’t sure what to expect out of my visit.  Would this take hours? Would it hurt? Was I going to have to fill out a mountain of paperwork? The answers were no, no and no.


Upon arrival, I was greeted by Christy (Dr. Slavin's nurse practitioner), and we spoke about my experience with TN, as she wanted to learn as much as possible about the disease- a trait that far too few of us encounter in people. She then escorted me to a room where Fil, the research coordinator, was waiting. Fil calmly explained what was going to happen, got my consent, and we were off! There is no cheek swab, as I imagined there would be (too much Law and Order). Rather, all I had to do was fill a small container with saliva.




If you’re suffering a bout of dry mouth, like I was that day, maybe it’s a little more challenging, but it’s THAT EASY. As I (slowly) filled up my container, Fil asked me a series of 22 easy questions. The questions are designed to determine if the participant has ever been diagnosed with classical Trigeminal Neuralgia, or TN1. By Question #22, I’d hit my quota. Total elapsed time- 10 minutes! Ten short minutes to be a small part of a major study in finding a cure!


I was the 40th TN patient to donate in Chicago, and that got me thinking.... “I'm only number 40?” The initial goal of collecting 50 samples at each collection site was set in March 2014,yet here we are over a year later, and some of the collection sites haven’t come close to that number. Here are the sample totals at each of the 9 collection sites, as of June.













U Toronto


U London


U Illinois


U Florida







 OK, so Oregon is killing it, but only one other collection site (Toronto) has met the goal of 50 samples. And the urgency to donate is even greater, as ALL of the facilities have now been authorized to collect 100 samples each. That leaves at least 8 of the sites in need of volunteers, volunteers like the TN patients reading this newsletter. If you live near any of these facilities, please donate. Trust me, it’s incredibly easy. 


 I promised you a synopsis from the scientists, themselves, and hopefully it explains the project a little better than I did. Dr. Marshall Devor and Dr. Kim Burchiel authored the update below. But please read on afterwards for a fundraising update.


Latest Update on Genetics Study: 


Number of Genetic Sequencing to be increased from 500 to 1000


 The goal of this research is to identify the genes that predispose individuals to develop trigeminal neuralgia. Converging lines of evidence now strongly suggest that no physical characteristic, such as neurovascular compression (NVC), can explain all cases of Type 1 Trigeminal Neuralgia (TN1). We believe that individuals with TN1 must have a set of genes that put them at risk for the development of TN, with or without NVC. Our investigative group is now convinced that given a statistically relevant sample of patients with TN1, we will be able to identify these genes.


We now have nine centers, including two international centers, actively acquiring DNA samples in patients with TN1. Currently, we project that we will have in hand 500 patient samples by mid-summer 2015, our original goal. At this time we have approximately 400 samples collected.  We believe that with a modest increase in our budget, we could double that number to 1000, and finish that sample acquisition by spring 2016. This sample size increase would substantially increase the power of our study, and would strengthen the reliability of our conclusions.


Looking ahead, this team of investigators has put forward a strong case for doubling the number of saliva samples collected from 500 to 1000. They point out that such an increase in sample size would substantially enhance the power of this study in addition to strengthening the reliability of any conclusions drawn. They project that collection of an additional 500 samples could be completed by Spring 2016.  200 are presently at the Rutgers Genetics Lab for processing.  It should be noted that should the additional 500 samples not be needed to complete the present study, they would be available for the “next step” in this research journey to cure TN pain without a loss in momentum.  


 Those people interested in donating their DNA please email their requests to This email address is being protected from spambots. You need JavaScript enabled to view it..  Collection is happening at Oregon Health and Science University, University of California, San Francisco, University of Florida, University of Toronto, University of Illinois, Chicago, University of Pennsylvania, New York University, University of California, San Diego, London UK (Joanna Zakrzewska)


Now let's talk about fundraising. I'm excited about this first effort, as it will not only raise money for FPRF, but also provide a little comfort for TN patients, and help to educate those unfamiliar with the disease.


Trigeminal Neuralgia Exposed: "Our Story" is a book about TN, written by TN sufferers. Led by author (and TN sufferer) June Toland, "Our Story" contains quotes and shared experiences from 54 TN sufferers, family members and caregivers from around the world. It is especially invaluable to new sufferers. If you purchase the book pre-sale, it's only $12.99. And the best part? ALL profits go to FPRF. For more information, or to purchase the book, go to, or you can find June Toland in the Facebook group TNExposedOurStory.


We're also only a few weeks away from 2 really great fundraising events.  Let's Face It: An Event to Help Cure Trigeminal Neuralgia is July 18th at the Liberty Vineyards and Winery in Sheridan, NY. I told you about this last month, but just a refresher- 20 bucks for a big feast of a dinner, entertainment and wine for purchase! They're also going to have a pretty outstanding prize auction. For information, or tickets, visit, or events/. You can also call the vineyard directly at 716-672-4520.


And The 4th Annual Race to Save Face! is coming up quickly on July 10th. Runners, walkers, and supporters are invited to Dover, Ohio for a 5-mile race, a 2-mile walk or a 1-mile fun run for participants 12 years of age and under. If running isn't your thing, the beautiful School House Winery will have food and wine available for purchase. There will be entertainment by REN, a silent auction, raffle prizes, and swag for those participating in race events. For more information, such as race times, prize information, locations to buy raffle tickets, and updates on the event, you can visit their Facebook page. Simply search RACE TO SAVE FACE.


And now for some updates on recent fundraisers . . .


TN warrior and military wife Angela Strenad raised $700 from selling TN-related T-shirts and sweatshirts. She designed the shirts herself, and sold them online using a Booster campaign. Congratulations Angela!


On April 30th in Grafton, MA, Leah Allen and Hannah Babb hosted a ballet performance in honor of Hannah's dance instructor, TN warrior Jen Agbay. "Peter and the Wolf" raised $1,210 for the FPRF, and rumor has it, there will be another performance fundraiser next year.


Frank Skoviera, our Communications Director here at the Foundation, has raised $2,000 through his employer, IBM. The IBM On Demand Community program allows IBMer’s an opportunity to receive grant money from IBM to support their volunteer work at non-profit charities. Frank has raised money for the FPRF for the past two years by taking advantage of this generous program. Frank also has a Team of IBM volunteers spread across nine countries working to raise awareness of TN and neuropathic facial pain.


Next month, I'd like to talk more about fundraising- specifically, about on-going internet fundraisers, ideas for fundraising and much more. Remember, if you are planning a fundraiser, please contact us- we want to help you spread the word!


We will also hear from Toni Saunders (TNnMe founder) about her latest project- asking the World Health Organization (WHO) to add Trigeminal Neuralgia to their "Health Topic List." This is so important for spreading awareness, and we can help her make it happen!


As always, feel free to contact me at This email address is being protected from spambots. You need JavaScript enabled to view it..


Until next time, here's to a pain-free future!


Amy Tomasulo



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