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MINI NEWSLETTER APRIL 2017

Hello from Mary Ellen and the Facial Pain Research Foundation! I am excited to compose the first 2017 Mini Newsletter for the Facial Pain Research Foundation. Let’s begin! 2016 was a busy year for the Foundation with countless requests for help with this horrific disease. Requests were received from TN patients and family members reaching out in search of assistance, guidance, and hope. 2016 ended with my husband Frank Skoviera, Communications Director for the FPRF, returning from his 53-day, 12,500 mile “Drive Away the Pain” Campaign; raising over

$15,000 for research. During Frank’s campaign, he met with TN patients, as well as, their families, friends, and caregivers. Many of the family members and caregivers that Frank met with shared the identical desperate feeling I have of not being able to take away the pain, of fruitless trips to doctors and dentists with no answer as to how to relieve the pain, and how very difficult it is to watch the daily anguish that their family member experiences. As caregivers, we silently and intimately share in the pain. We learn when we can engage in a conversation and when we cannot. When we can accept a social invitation and when we must decline. How even slight changes in weather, impact the severity of the pain. We learn Patience. We watch as our loved ones arise with a smile and a prayer to face yet another day of endless pain. We marvel at their strength, perseverance, and fortitude. We hold fast that we will see the cure from our dedicated scientists. Scientists that Frank and I had the pleasure of meeting at the Third Biennial Facial Pain Research Foundation International Consortium Meeting! We were honored to attend the Consortium. It was two days packed with exciting news, updates, and one-on-one time with the scientists! We encourage everyone reading this newsletter; either a family member or a patient dealing with the horrific effects of Trigeminal Neuralgia to hold fast to the hope that cures will be found allowing all who suffer the ability to return to a peace-filled, normal way of life. See more information and photo below!

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Third Biennial Facial Pain Research Foundation International Consortium Meeting!

The FPRF Biennial ‘Scientists Meeting’ was held March 8th and 9th in Gainesville, Florida. Participating, were scientists and researchers from each of our five projects, FPRF Trustees, NIH representatives, and invited guests. Presentations and scientific interaction was conducted on each project during the two day program. As you can imagine, a significant amount of data was shared showing considerable progress toward finding cures for Trigeminal Neuralgia and related facial pain. In the next few weeks, we will be releasing a summary report on each research project. I’m sure you will find the report most informative and encouraging.

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Now onto the RESEARCH UPDATES….

Volunteers Suffering from Trigeminal Neuralgia Needed for our Brain Imaging Study!!

"Mapping Towards a Cure - Identification of Neurophysiologic Signatures of Trigeminal Neuralgia Pain". This project is of such high priority for the Facial Pain Research Foundation (FPRF) that we have approved travel

funds up to $500.00 for qualified subjects. Trigeminal Neuralgia (TN) is an idiopathic pain disorder that is characterized by episodic attacks of intense facial pain. Given the severity of this disorder, figuring out the cause becomes essential for finding a cure. To this end, this project will study the cause of TN. We hypothesize that there are specific areas of the brain and spinal cord that will provide a "signature" center of activity. We will use state of the art Magnetic Resonance Imaging (MRI) machines to locate these centers in people with TN before and after their pain has started. Identifying a signature center will provide targets for new treatments. To be eligible you must be: -18 - 75 years old. -Suffer from and diagnosed with Classic Trigeminal Neuralgia, Type 1 -Average Pain in the moderate to severe range -No additional major health problems -Be able to travel to Gainesville, Florida and spend approximately 4 hours -Fluent in English (written and spoken) Exclusion: - Unable to complete a Magnetic Resonance Imaging (MRI) scan due to implanted or un-movable metal material in your body or severe claustrophobia For further information about volunteering for this study call or email: John Neubert, DDS, PHD, Project Leader, University College of Dentistry, McKnight Brain Institute, Gainesville, FL., (352) 273-5687 or jneubert@dental.ufl.edu.

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Finding the Genes that Predispose to Trigeminal Neuralgia Our DNA project is really coming along, thanks in large part to the efforts of TN1

volunteers. In fact, the first 500 samples have been sent to Rutgers for processing and analysis. The Scientific Team is very excited about the initial findings which you will be able to read about in Dr. Doug Anderson’s Annual Report for the Foundation’s WebNewspaper (facingfacialpain.org)…Watch for an “Extra-Extra” from us soon. The project has been collecting an additional 500 DNA samples from TN1 volunteers and are now at

the 350 mark…leaving only 150 to go…There are only five Collecting Centers still active: OHSU (Oregon Health and Sciences University), University of Florida, University of Chicago -- Illinois, University of Pennsylvania, and New York University. The following Centers have reached their goals and are now inactive: San Diego, UCSF, London, and Toronto. If you are interested in being part of the study and wish further info, please email: info@facingfacialpain.org.

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Fundraising Updates . . . 6th Annual Race to Save Face! July 14th, 2017 / 7:00 PM, School House Winery in Dover, OH Runners, walkers, and TN supporters are invited to Dover, Ohio for a 5-mile race, a 2-mile walk for a cure or a 1-mile fun run for participants 12 years of age and under. Not a runner? Not a problem! The beautiful School House Winery will have food and wine available for purchase. There will be entertainment, activities, raffle prizes, and goodies for those participating in race events (please note - prices differ per event). To sign up, or for more information (such as race times, raffle info, and updates on the event), just search RACE TO SAVE FACE on Facebook.

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Amanda Rigdon is helping raise money for research!!

Amanda has 6 bracelets and neck warmers. The bracelets are $4 each with an additional $1 for international shipping, 50% of the proceeds to go to the Facial Pain Research Foundation.

Neck warmers are $10 each with an additional $5 for international shipping with 50% proceeds going towards the foundation.

Amanda's contact information is 231-571-7943, text is best, or email at mandy_nienhuis@yahoo.com or you are welcome to find her on Facebook at www.facebook.com/amanda.nienhuis.5.

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Sok Away the Pain! April 25th thru May 29th. Inspired by the Drive Away the Pain campaign, TN Patient Anthony Rhimes is putting together a fabulous fundraising event that will sell designer socks and accessories. Forty percent (40%) of the sales proceeds will be donated to the Facial Pain Research Foundation. Anthony has been involved with many other fundraisers and recently said “why not, I’m a patient, and raising money for research to find cures makes perfect sense”. A little over a year ago Anthony’s son had an idea to start an online company called SokGuru, which has a wide array of fashionable socks that you can wear for any occasion. So if you want to express yourself without breaking the bank and help FPRF at the same time this is the place. Not one pair of SokGuru socks will sell for more than $5.50. The average cost will be $3.89 a pair. Buy $15.00 of products and get free shipping. Great for Mothers and Father’s Day gifts. Click www.sokguru.com to browse all styles of Sokguru products.

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Amazon Smile has a large variety of gifts that are perfect for Mother’s Day and Father’s Day, including electronics, jewelry, clothing, and more that will increase donations for The Facial Pain Research Foundation. This charity-link takes you directly to the FPRF Smile Amazon page: smile.amazon.com/ch/22-3071645. Thank you for your support!

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Congratulations to Our Successful Events!

Thank You Isabella!!

17 year old Isabella Calandra held a fundraising event on behalf of the FPRF and our dear TN friend Jennifer Agbay. Jennifer says Isabella is an amazing young lady, smart as a whip, and a leader in her community.

The Silent Auction and Raffle was held during the Worcester County Dance Festival. The Worcester County Dance Festival is an event featuring an evening of dance celebrating New England’s talented schools and companies on one stage. The event took place on Saturday March 25, 2017 at St. John’s High School in Shrewsbury, It was an amazing evening of dance and with a silent auction and raffle, which featured Red Sox Tickets and a Westborough Tennis and Swim Club Fitness membership.

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Frank Skoviera, our Communications Director here at the Foundation and IBM retiree, has raised another $2,000 for the FPRF through his former employer, IBM. The IBM On-Demand Community program allows IBM employees and retirees the opportunity to receive grant money from IBM to support their volunteer work at non-profit charities. Frank has used the IBM program to raise money for the FPRF for the past four years. Additionally, as a result of Frank’s volunteer efforts he was awarded ‘The President’s Volunteer Service Award’ Gold level for 2016.

‘DRIVE AWAY THE PAIN’

Frank describes his journey last fall as ‘magical’, a trip he never could have imagined, even on his best day, and trust me he has a very creative imagination and passion when it comes to helping people. I suspect that Frank would never take on a campaign like

DRIVE again, although every once in a while I’ll see him off thinking about it. I know it impacts him deeply because he truly wants to make a difference to those who suffer from horrific trigeminal pain. Will he ever attempt it again, I guess only Frank (and Max) know for sure. His DRIVE story can be found at www.facingfacialpain.org and his DRIVE movie can be found on Facebook at Drive Away the Pain. If you want more information on this campaign, please contact Frank at News@facingfacialpain.org.

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TN Warriors Run NOLA

Jenny Zimmer and friends raised money to fund research for cures for Trigeminal Neuralgia! Jenny’s team ran the Half Marathon in New Orleans on February 5th. See www.facebook.com/tnwarriorsrunnola. Jenny says “Thanks to everyone for their support for TN Awareness. This fundraiser was a success and more importantly we hope we raised awareness. 6am training six days a week and your support has brought this amazing experience to the finish line. Stay tuned we are not done!” Thank you Jenny and Friends, the FPRF!!!

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Nia Weller Launches A New UK Charity To Beat Trigeminal Neuralgia, to fund The Facial Pain Research Foundation’s Scientific Research.

Click on this link to read about the efforts to help raise money for research by Nia Weller and her husband Stewart, a TN patient.

http://www.facingfacialpain.org/index.php?option=com_content&view=article&id=252:uk-pain-charity-to-beat-tn&catid=36:about-us&Itemid=180

Thank you Nia and Stewart, the FPRF!!!

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LAUGH YOUR FACE OFF GOING LIVE-STREAMED:

We know that almost all of you have been following the success of LYFO on our Web Newspaper and Facebook. We have just a brief reminder: For all of our patients and supporters outside of Chicago, we’ve arranged for the station to live stream the show at wgntv.com, beginning at Sunday (tonight) 8PM Central Time. So you can watch it ALL OVER THE WORLD. It will also be live-

streamed on Saturday, April 29th, at 10pm Central at wgntv.com and on Saturday April 30 at 12pm Central time on CLTV.

Thank you Pat and Amy, you’re amazing! the FPRF!! P.S. Look for Amy to be back at the next Mini Newsletter as 2017 LYFO winds down.

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Brazilian volunteer, Tatiana (Tati) Ferreira handmade sets using her mascot to help raise money for the research to find a cure for TN!

Each set includes a mug, a magnet, a pen, a key ring and a pin. The items have the Facial Pain Research Foundation name on each one. Tati selling the sets for R$ 35,00 each (approximately $11.00 U.S.) and they can be printed in English.

Also, if you want to view one of the best videos put together for a patient with TN please go to our Facebook page; https://www.facebook.com/The-Facial-Pain-Research-Foundation-160757577309005/ and scroll down to the above type in bold.

Thank You Tati, the FPRF!!!

A HUGE thank you to everyone mentioned and to all our volunteers! As you can see, most of our fundraisers are organized by TN patients (or their family members)! If you're planning a fundraiser, regardless of its size or scope, please let us know so we can help promote it. Until next time, here's to the cure! Mary Ellen Skoviera news@facingfacialpain.org