Editors Note: Hanna Smith is a contributing writer for the Facial Pain Research Foundation. She is an award-winning journalist and assistant author of an in-progress medical biography detailing life with chronic pain. A student of bioclinical science, Smith studies surgical technology, psychology, physiology, and neurobiology to specialize in the medical treatment of individuals with disorders such as Trigeminal Neuralgia. Her father, diagnosed with Type-I TN for 26 years, inspired her to be dedicated to and engaged in the awareness, research, and medical practices that change the lives of people with chronic pain.

Shelly Forster:

The Purpose of Pain

Shelly with her family

By Hanna Smith

It was Shelly Forster’s most burning question: What is my purpose?

Fighting through reconciling the logistics of her new life diagnosed with chronic pain, rock bottom became her home in 2008 – and it left her with a choice.

2008 is the year Forster underwent two brain surgeries and was diagnosed with three chronic pain disorders – oral mandibular dystonia, trigeminal neuralgia and tardive dyskinesia – all of which transformed her from an independent woman working in nuclear engineering to a homebound patient fighting for her life.

“Pain is the great debilitator,” Forster said. “Chronic pain is a different animal all together, but takes on a new, terrifying element when it’s neurological.”

A congenital tumor inside Forster’s cerebellum was the root of her startling symptoms – muscular contractions in her neck, loss of voluntary control of her jaw and tongue, and splitting migraines.

For some time prior, Forster attributed the consistent headache and preliminary symptoms to stress at her job as a document control specialist for a nuclear engineering company. Such a job often required 70-hour weeks with round-the-clock hours. Forster assumed her symptoms to be somewhat normal considering the abnormal circumstances.

However, when the pain worsened and ultra-abnormal symptoms arose, she sought medical attention. Forster walked out of the doctor’s office with an emergency brain surgery scheduled the next day to remove the tumor inside around her cerebellum – the brain’s motor control center, which explained the involuntary movements in the cervical region of her head.

Dystonia impacts approximately 250,000 people in the United States, according to the American Association of Neurological Surgeons. Despite it being the third most common movement disorder, it is widely un-recognized by the public.

Forster underwent a surgery which removed the tumor. She was able to go home and began the recovery process. However, during a follow-up appointment, an additional MRI revealed there was a secondary tumor – this time woven within her cerebellum.

Forster for the second time was scheduled for emergency surgery, during which the surgeon filleted her cerebellum to remove as much of the tumor as possible. By the time the surgery was finished, however, 20 percent of the tumor was untouchable and too entangled in nerves. This portion still remains in Forster’s cerebellum to this day.

Prior to the operations, Forster says she understood her painful symptoms were in direct correlation with the tumors. Thus, following the surgical removal, she also assumed, based on medical opinion, that those symptoms would disappear.

Reality, however, did not meet those expectations.

Because of the neural damage coupled with the manipulation of the cerebellum during the procedures, Forster was left with permanent damage that resulted in her ongoing diagnosis of TN, dystonia, and tardive dyskinesia. It took visits to approximately four doctors before she was properly diagnosed.

THE FIRST THREE YEARS

With fluctuating medical treatments as doctors attempted to find a perfect medicinal cocktail to treat her pain – all the while attempting to acclimate to these new doses – Forster remembers the first three years of her illness as a fog.

During that time, she kept journals. Always a writer since childhood, putting her thoughts – no matter how jumbled – on paper helped her express and sort the emotions jostling through her mind.

“I took notes. I wrote things down about how I felt and what I was thinking – my faith and family and the roles both played,” she said. “I wrote down the good and the bad.”

Many days, Forster’s pain levels were off the charts and she was unable to function. It was during this time that she asked the pivotal question which determined the rest of her life: What’s my purpose?

Finding a purpose in the pain, she said, was the key for her survival by developing psychological motivation which would bolster her physical perseverance.

A wife, mother of three and now grandmother of three, Forster says she didn’t have to look far. Additionally, she began to recognize the unique position her illnesses put her in. Forster said this made her feel responsible for sharing her story with others – with the end goal of letting people with chronic pain know they’re not alone.

Fighting for her health meant fighting for her family and for others in similar situations.

Forster clearly found her purpose.

“It’s easy to accept your situation and move on,” she said. “But when you start paying attention to the battle and educate yourself, you’ll increase your quality of life.”

THE OTHER SIDE

Amid the turmoil of the first three years, a precedent was set in many facets of Forster’s life – experiences which developed the dynamics of what would become her new normal.

“I was able to discover trends,” she said. “I put a magnifying glass over the truth.”

Some relationships were lost. And although those years are met with what she says are some regrets, she knows the Shelly Forster of that time was often not reflective of her true character. During those times, pain sometimes spoke louder.

“It’s OK to walk away from relationships, no matter who they are, if that person cannot support them during their darkest moments,” she said. “We need to be relieved from that accountability.”

On the other hand, however, she says she knows the lost relationships proved who would stand by her side through the worst time of her life – and who couldn’t or wouldn’t. From that point, she established her core team of reliable people who became her baseline for support.

“When pain begins to define relationships, you are beginning to find out what other people are made of,” she said. “It’s the recognition that, because pain is part of my everyday life, those people are the ones that I need to walk away from for my benefit.”

Forster also established a core medical team. Because of the rarity of her disorders, she was referred to medical specialists, many of whom were considered cutting edge in their fields. But, being cutting edge, she discovered, did not equally entail compassion and willingness to advocate for patients. Through this realization, Forster learned to advocate for herself – even if it meant cutting off ties with doctors whom did not have her best interest in mind or were unwilling to help in her fight for her life.

This journey ultimately landed her at the Rochester, Minnesota-based Mayo Clinic, where she began undergoing botulinum toxin injections. According to The Dystonia Society, BTX treatment injects Botox directly into the targeted muscle which is impacted by dystonic activity. Although botulinum toxin is toxic in purified and controlled doses, it can help to relax muscular activity.

At the Mayo Clinic, Forster was treated by now-retired Dr. Joseph Matsumoto, who every three months typically administered 12 injections into her cervical muscles. The needles, approximately 30-gauge, are connected to a monitoring machine which judges the muscular-contraction activity at the time of injection with an auditory response. Always, the machine is buzzing at high volume when the needles are inserted. Forster’s husband Tom said sometimes he can see the needle bend slightly as it attempts to pierce the muscle.

Her daily companion for treatment is the pill box – containing pills assisting with pain relief, muscle relaxers, antispasmodics, blood pressure for hypertension linked to pain, and anti anxiety. Creating this fine-tuned cocktail took 10 years, and Forster said it still changes periodically as new medications are produced. It’s all trial and error.

NEW NORMAL

For all the absurdities and abnormalities in her life, Forster recognized trends and patterns – details that made her world a better environment. She learned her body’s unique responses to treatments or the lack thereof. Mitigating stress and being selective regarding which social interactions were most pertinent allowed her to venture from home without facing devastating impacts.

“What I’m going through is overwhelming enough,” Forster said. “I’m just getting through this moment. And not just get through. I’m trying to live this moment. Chronic pain patients need to know there’s life.”

Moving forward in this mindset, Forster said she’ll often plan ahead when she knows there is an important event she wants to attend – such as her grandson’s birthday party. In the days leading up to the event, Forster will rest more frequently and ensure she’s medicated properly.

Forster continued to write. This time, however, it was tracking her knowledge, medical progression, and jotting down pieces of inspiration that ignited fire in her fight for life. From psychology to medical management, Forster began to formulate her new normal.

At the same time, her purpose of pain began to grow arms and legs – and a plan came into focus. Forster fell back on her writing abilities, ultimately beginning work on a medical biography to share her story and gained knowledge to assist others who need direction in learning how to find a new normal after a chronic pain diagnosis.

Looking back, Forster recalls the many dark days when she considered what her purpose was. But, today, she is grateful to be alive with her purpose living and growing around her in the form of family and advocacy for others.

“The dark days behind me taught that the dark days to come are survivable,” she said. “Every time you have to apply that strength, it means you’ve got it in you for the next time.”

The Facial Pain Research Foundation

Board Of Trustees

Founding Trustees

Myron A. Hirsch, Ph.B., an author, editor and book publisher, founded Whitehall Printing Company (a book manufacturer) in 1959. The company prints thousands of books each year, including educational books on neuropathic facial pain for patients and their families, as well as health-care professionals. Hirsch also is editor-in-chief and publisher for Collage Books Inc. He is championing efforts to find a cure out of passionate concerns for his wife, Harriet, who experienced a return of trigeminal neuralgia in August 2010 after enjoying many pain-free years resulting from a Gamma Knife® procedure. He is a former president of the TNA-FPA, and was an active board member for 8 years. He and Harriet live in Naples Florida. Today Harriet is again pain-free.

Roger L. Levy, Esq., LLM, AIFA®, is a former attorney now serving as CEO of Cambridge Fiduciary Services LLC, a fiduciary consulting firm based in Scottsdale, AZ. Educated in England, he practiced law in London and was a partner in Taylor & Humbert, one of England’s oldest law firms, before immigrating to the United States in 1975 where he joined Saul Ewing Remick & Saul in Philadelphia. He holds a Master’s degree from Temple Law School.

Levy became an international spokesperson for the cause of trigeminal neuralgia for a compelling personal reason. For eight years, he suffered “in a wilderness of pain” that shut down his career and forced him into a dark corner of silence. When his pain was finally ended in 1997 through microvascular decompression surgery, he became an active volunteer with the TNA-FPA and Chairman of its Board from 2000 to 2013. He has continually championed the need to find a cure. He and his wife, Maddie, live in Scottsdale. Emeritus.

Michael Pasternak, Ph.D., an entrepreneur who co-founded the world’s largest retail hosiery company, started a Trigeminal Neuralgia Association support group in Nashville, Tenn. after suffering with trigeminal neuralgia. He later left the corporate world and became a board member and subsequently president of the TNA-FPA. He coordinated the association’s early national conferences for health professionals and patients, and helped it develop patient materials, support groups and a patient registry. Prior to his business career, he served as a professor at Vanderbilt University, the University of North Carolina and Michigan State University where he taught courses in Understanding and Improving Organizations and Leadership. Pasternak underwent successful microvascular decompression surgery for TN in 1992, and remains pain-free today. He and his wife, Sherrilyn, live in Gainesville Florida.

As a Founding Trustee of The Facial Pain Research Foundation Michael is focused full-time on the Foundation’s research, fund-raising, and organizational activities. Michael and his wife Sherrilyn enjoy their ten grandchildren, agility dogs, and travel.

Trustees

Douglas K. Anderson, Ph.D., Eminent scholar professor and chairman emeritus of neuroscience at the University Of Florida, College Of Medicine (UFCOM) and McKnight Brain Institute (MBI). As Director of Research of the Facial Pain Research Foundation (FPRF) Dr. Anderson has been responsible for setting the research priorities of the FPRF by selecting five diverse,

novel projects to fill out its research portfolio. Dr. Anderson is known for his pioneering laboratory research that led to the nation’s first implantation of human embryonic nerve tissue in eight patients with a specific complication of spinal cord injury in order to establish the safety and feasibility of nerve tissue transplantation in humans. Prior to his transplantation studies,

Dr. Anderson contributed significantly to the development of the first frontline medication for acute spinal cord injury. A graduate of Michigan State University, he was selected to be a senior research career scientist with the Department of Veterans Affairs in addition to serving 10 years as chairman of the Department of Neuroscience at the UFCOM and interim

executive director of the MBI for a year prior to his retirement. He and his wife, Beth, live in Gainesville, FL. and in Carmel, IN.

Richard Baron, Esq., since 1980, has been the managing principal of the Law Firm of Richard Baron & Associates. With almost 40 years of litigation experience in the Federal and State Courts throughout Florida, Mr. Baron has tried hundreds of cases dealing with commercial and transactional matters, family law matters, Florida Bar disciplinary matters, and criminal matters. Mr. Baron has been appointed numerous times as a Guardian Ad Litem to assist Family Court Judges in difficult cases with alcohol and drug issues and was honored by the Eleventh Judicial Circuit as the “Guardian ad Litem of the Year” in 2009. In addition, Mr. Baron has argued many cased before the Supreme Court of Florida. He has experienced the pain of trigeminal neuralgia and for many years was a Director of FPA-The Facial Pain Association.

Daniel P. DiCaro has extensive business experience as an executive in several public and private companies. With those companies, he has been a member of the Board of Directors and/or has been responsible in various roles for all aspects of executive level management including areas such as product and business development, finance and operations. He has a strong background in corporate finance, mergers and acquisitions, private equity and venture capital financing. He most recently served as an Operating Director of City Capital Advisors, an investment and merchant banking advisory firm starting in 2006 before stepping aside for health reasons in 2013. He has experienced trigeminal neuralgia and is passionate about providing the leadership necessary to find the cures and end the pain for everyone.

Suzanne N. Grenell, MBA, is a creative writer, poet, motivational speaker, and author of several inspirational books, including End The Pain; Neuropathic Facial Pain Expressions and Impressions. She became an active volunteer in helping others after suffering with trigeminal neuralgia for a dozen years, and overcoming two bouts with breast cancer. She is now pain-free, cancer-free and medicine-free. After earning a Master of Education degree at the University of Minnesota and an MBA at Arizona State, she taught high school social sciences for six years and served in worldwide positions with Intel Corporation for 23 years. She is a former member of the TNA-FPA Board of Directors, and lives in Scottsdale, AZ.

Elizabeth Cilker Smith is recently retired after 25 years at Cilker Orchards. There she served as Vice President assisting with the development of commercial, residential and office development in Silicon Valley, California. During that time she organized the Town of Los Gatos business Boulevard Community Alliance, served on the General Plan Committee, presided as President of Los Gatos Rotary and was a member of various nonprofit boards. After suffering from Trigeminal Neuralgia for 6 years she had a successful micro- vascular decompression surgery. Since then her passion is to help others so no one suffers the traumatic pain that afflicted her. She served as Secretary of Trigeminal Neuralgia Association and later became the West Coast Coordinator of FPRF.

Through her parents, she facilitated the donation of the William H. and Leila Cilker grant to the DNA Genetic Research Project. Elizabeth holds a MA in Education, serves on the Cilker Orchards Management Corporation Board, and the West Valley Community College Advisory Board for the Bill and Leila Cilker School of Art and Design.

Pat Tomasulo is the Sports Anchor and Reporter on the WGN Morning News. He joined WGN-TV in June 2005. Prior to coming to WGN-TV he was a Sports Reporter and Anchor in Buffalo, New York and in Rhinelander, Wisconsin. In August of 2009, Pat was voted one of the top five broadcasters chosen to sit alongside Kelly Ripa as co-host to “Live with Regis & Kelly” as part of a nationwide promotion. He was also one of the hosts of “Shaq Vs,” a nationally televised reality show featuring basketball superstar Shaquille O’Neal. Pat and Amy Tomasulo have raised over $1,200,000 at four “Laugh Your Face Off” comedy fund-raisers benefiting The Facial Pain Research Foundation at the Chicago Laugh Factory.100% of the proceeds were donated to The Facial Pain Research Foundation. Pat Tomasulo, the event's host and one of the scheduled comedic performers, has personal experience with the disease as his wife, Amy, has suffered from its devastating effects for years.

Jay Winer, independent marketing/public relations consultant and fund-raiser, formerly served as executive director of public relations and community affairs for The Grove Park Inn Resort and Spa in Asheville, N.C. He achieved over 50 national television specials and print featurestories as well as regional and local news coverage, resulting in over $15 million in advertising value equivalency. He worked with his wife, Maddy, to book popular entertainers and direct over 100 theatrical and concert stage events. He is a leading supporter of historical resources, National Historic Trust and the humane society in the Asheville area. Jay has provided volunteer services to the TNA-FPA for twelve years. Although not affected by facial pain, he gained compassion for people in pain when he heard their stories and talked with them while videotaping a series of national TNA conferences led by his friend, Michael Pasternak. Jay said he became hooked on the cause of finding a way to bring relief to men, women and children struggling with terrible pain. He and his wife, Maddy, have homes in Asheville and Indialantic, FL.

Former Trustees

Jean Raymond is retired after working over 25 years in computer programming, software design,

network architecture, database management and tracking systems. Jean has rendered technical support for

companies such as Western Electric, Digital Equipment Corp. and Dartmouth College/Dartmouth

Medical School. She has served on TNA-FPA Board of Directors since 2010. Jean was appointed

to the FPRF Board of Trustees to serve as liaison with the TNA-FPA board. She lives in Middlebury, VT.

Albert Rhoton, Jr. 1932-2016

World Neurosurgeon of the Year Albert Rhoton, Jr., MD., was a Facial Pain Research Foundation (FPRF) Trustee.

He had treated over 3,000 patients with trigeminal neuralgia and related neuropathic pain before he retired and became the inspiration for the FPRF’s cure research projects. His guidance and vision was evident when he proclaimed the founding of The Facial Pain Researth Foundaion was

“ONE OF THE MOST IMPORTANT DAYS IN THE HISTORY OF TRIGEMINAL NEURALGIA!”

In March, 2013 He said “it is time to find a cure!” and the Foundation’s

International Consortium of renowned scientists moved forward.

Letter from Tina

Have you ever stumbled across something so great and rewarding that you just can’t get enough of it? I did, and my life hasn’t been the same. And I am more than okay with that.

Living with chronic pain is challenging. It can be a struggle. A daily, grind it out, beg for it to be over kind of a struggle. Sometimes I can’t do the things I used to do be able to do, or the things that made me, me. But I also remember how much worse I felt and how destructive the pain was I experienced before I had microvascular decompression (MVD) surgery. I still hurt daily but knowing how much worse the pain of Trigeminal Neuralgia can be, I “face” my pain and my life differently now. A few months after my surgery, I decided one day I did not want TN to control me and push me back down into those dark depths of despair, isolation, and depression.

So I did what the millennials do these days.. I turned to the internet. One day while I was doing some research while volunteering for the Facial Pain Research Foundation (FPRF), I was looking into the ways people get TN- especially from head trauma. That search lead me down a path that covered our military and the way some of our wounded warriors have gotten TN from traumatic brain injuries. That got me thinking. If we are losing some of our veterans to this terrible beast called PTSD.. and some of them also have ‘The Suicide Disease’, that’s unimaginably not fair!

I immediately thought, how can I reach them?? How can I let them know about the FPRF and the research and work that is being done to stop this pain? How can I get to them to remind them to Hold On Pain Ends? If they don’t know about the Foundation, then they don’t know there is light at the end of the tunnel.. that scientists and researchers are actively working to stop the pain of TN and just maybe that will also help with some of their PTSD stressors.

One of those internet searches that day led me to an organization called Team Rubicon (TR), where their slogan is “Disasters are our business. Veterans are our passion.”

TR is a veteran based disaster response organization that also welcomes what they term ‘kick-ass civilians’. I thought.. Well, I love doing physical labor, helping people, and have always wanted to delve deeper into volunteering so hey, that sounds like a great place for me. Besides, I promised myself at one point during this TN journey I’m on to try to step out of any comfort zones~ to really live, think and stay positive, appreciate and take full advantage of the moments of lesser pain, and do things. So, I signed up that day on TR’s website, completed my prerequisites, became a Greyshirt, and in less than a month I was on the way to Texas to help the wonderful people in those communities who were affected by Hurricane Harvey.

That first deployment, that week, was amazing. We were a group of about 70 strong staying in a church gymnasium in Friendswood, TX on cots, with lots of hard work to do, little sleep, and just happy to be there. Signing up for a disaster response organization, flying from Florida to Texas knowing nobody, living with constant pain in the form of an hidden disease, and walking into a room full of strangers was more than a little intimidating. But by probably half a day later, I had a whole new family, a TRibe. Meeting and working with those veterans and civilians (from early 20’s into their 70’s) that week will forever be engrained in my memory and my heart. And being able to help our fellow Americans on their worst days was rewarding and meaningful to say the least. Sometimes a homeowner would thank us for what we were doing, but in reality we were all thanking them. It showed me on a whole new level what true humanity should be about. It gave me purpose. It gave the veterans I was serving with purpose again. And the whole experience filled my soul. We drank the TR kool-aid.

The friendships and bonds formed that first TR deployment still run deep. Those strangers who became family know much of my story. I am in contact with at least one of them weekly, if not daily. They check up on me, inquire about how I’m feeling, and keep me motivated. And they know all about the Facial Pain Research Foundation now. I have made sure to make others aware of TN and the FPRF should they run across anyone who needs more information or a listening ear. Some of my new “family members” have even donated money on multiple occasions to the FPRF!! To me, that is love. And it is mutual.

I went back out to Texas 2 other times on disaster response deployments in Houston and in the Coastal Bend in the wake of Hurricane Harvey. Each time brought new experiences, a whole new wave of friends who became family, and the chance to help our fellow Americans when they desperately needed us. Being right in the middle of the destruction from the storm, doing strenuous, dirty, physical labor at no cost to the homeowner was some of the best work I’ve ever done. We would joke all the time that you couldn’t pay us enough to do this kind of work.

But we would gladly do it for free! Many times, the homeowners had no insurance on the houses we were working on or had a way to pay for repairs. Even though we were gutting, or even demolishing their homes, we were still taking a financial burden off their hands. Sometimes there were tears, but most always there was a hug and a big thank you to our Team. Your heart hurts for them. It could be you or family or your friends this was happening to. In the 3 months TR was in Texas for that Operation, they deployed over 1700 volunteers who serviced close to 1000 homes. I am honored and humbled to be included in those numbers.

Sometimes, in the middle of working on someone’s house.. doing a muck out or pulling up floors or carrying debris to the curb.. I find myself in amazement almost like, “When this one nail was being made, then boxed, shipped, sold, and used in the construction of this building, I’m sure whoever put it there meant it to be there for the long haul.” And maybe it was there for decades or longer. And then a disaster comes in and here I am, states or maybe even oceans away to pick it up or pull it out of a wall or a floor. And then I would go on this whole “Wow” thought process in my head about everything I see the paint, the wallpaper, the shingles, the flooring, the homeowners. All of those things have a story. They all had a journey. And now they are part of mine.

In May of this year, I went on my 4^th disaster response Operation, this time to Puerto Rico in the aftermath response to Hurricane Maria. As the plane was flying in, all you could see was blue tarped roofs everywhere. My heart sank. Those tarps are only meant to last about 90 days. We are about 9 months out from the storm and there is still widespread destruction on the island. Seeing so many damaged buildings from the air, I realized so much still needs to be done to get Puerto Rico and its citizens back up and running.

Again, I walked into a room of Team Rubicon Greyshirts who quickly became like family. As we split off into strike teams everyday, we all got to see different parts of the island, more destruction, and had countless, personal interactions with the locals. We were honored to have a few of our TRibemates on deployment with us, who are Puerto Rican and were on the island during the storm.

They themselves were affected by storm and still have damage to their homes, yet here they are helping those on the island who also need help. Those people we consider family were priceless to us, educating us on what the needs still are for the people of Puerto Rico, where the concentration of needs still are, and informed us there are still parts of the island with no power.

NO POWER!! I had to let that truly sink in. They themselves went without power for over 2 months. I can’t even fathom what that must have been like. They remember it like it was yesterday.

I happened to be in Puerto Rico during my birthday on that deployment. My team and I went to work on a home about an hour and a half away from our forward operating base (FOB).

This family lost probably 75% of their home and were staying in one bedroom that was left of the house. A husband and wife and an adult daughter shared a bedroom with a bathroom in it. That’s it. We spent the day cleaning up debris on the side of their house that was once their house. The family spoke almost no English, so it was a blessing we had one of the locals on our team. At some point, he informed the family it was my birthday. This family surprised me with home cooked tostones, rice and beans, and salad for lunch (my favorite meal).

THEN they surprised me with cupcakes and sang to me in English and Spanish. I lost it. I was so moved by their generosity and the efforts they took to thank us for a few hours of work at their house. They had little, and yet they gave what they could. That is what I know of the people of Puerto Rico. The kindness of everyone we interacted with was humbling. We were there to help, to try to do what we could. In your heart, you just wanted to help every single one of them.

Over that week, we worked on many homes from doing damage assessments, to debris removal, to chainsaw work. We even cut away some trees in one of their state forests to try to clear a path to one of the trails that provides revenue to the island. But no matter how much work we did though, there is so much more to do. It’s almost hard to feel accomplished when you drive the streets and see things that need to be repaired everywhere. I left that deployment in awe of the absolute beauty of Puerto Rico and the brokenness felt for all the people we could not get to help.

I returned home for only a week before I got redeployed to return to Puerto Rico for the last wave of that TR Operation. Again, flying into San Juan, I think I saw even more tarps than the prior flight path. This time around, I knew a little more of what to expect and thought I would not be as shell shocked as the time before. That didn’t happen. Again, destruction so widespread that it leaves much concern as the hurricane season has already started up again. The homes.. the businesses.. the infrastructure.. they can’t take another hit right now. Having met some of the locals, some of my heart is tied to that island and the well being of those who call that piece of paradise home. It leaves me troubled as to what we could be doing for them, or for the people of Texas, or your hometown, or anywhere in the world that disasters strike. I am proud to be a part of the TR mission and culture. I am honored to have done my little part for those that needed help, and I can’t wait to get out there and do it again.

The point I am trying to make is, I am a TN Warrior. I hurt all the time.. whether I am on vacation, going to the grocery store, or doing disaster response work. To be honest, the last is my favorite. Sure, I have some pretty strong TN attacks while I’m out there and giving it my all. I may have to hang back and not chainsaw for a bit because my sunglasses and helmet are hurting my skull, or the heat or the wind may be getting to my face. But for the most part, I won’t let TN stop me from my passion. The hardest part for me is when others see me in pain and have no idea what Trigeminal Neuralgia even is. They can’t “see” it, so to them it may not seem like much.

Sad, but true.

When I was recovering from my MVD, I couldn’t wait for the day I was going to be able to get up and go do stuff again. It took months. I knew I wanted to be an example or somehow show what positivity can do to change your daily life. Stumbling upon Team Rubicon was one of the best driving forces in my determination to not let TN control my life. Sometimes that’s easier said than done. I do still have the brutal, level 10+ episodes and days. But those days in between, the dash, that’s where the money is. That’s where you live.

Through a collaboration with Bureau of Land Management (BLM) and TR, I now have my wildland firefighter certification (Red Card) and am looking forward to helping in that capacity as well.

I am also the Orlando, Florida City Coordinator for TR. Whatever I can do to always further my knowledge, stay out of any boring comfort zone, be prepared, and help those in need, that’s where you’ll find me. Well, there and here. I don’t know what I would do without the FPRF.

For more information about Team Rubicon, please go to teamrubiconusa.org.

In service,

Tina Johnson, Director of Communications

Facial Pain Research Foundation

Neurona Therapeutics Joins

The Facial Pain Research Foundation

Consortium

Cory R. Nicholas, PhD
Co-Founder and Chief Scientific Officer; Neurona Therapeutics
Assistant Professor, Adjunct; University of California, San Francisco

Dr. Cory Nicholas is Chief Scientific Officer at Neurona Therapeutics. Prior to co-founding Neurona, Dr. Nicholas was a faculty member in the Department of Neurology at the University of California, San Francisco where his research program was focused on investigating the ontogeny of human cortical interneurons. Dr. Nicholas pioneered methods to derive interneuron precursors from human pluripotent stem cells for transplantation into multiple animal models of neurological disease. He maintains an adjunct faculty appointment at the University. Dr. Nicholas’s post-doctoral studies were conducted at UCSF. His pre-doctoral work at both UCSF and Stanford University investigated germ cell development from primordial germline and pluripotent stem cells. He received his Bachelor’s degree from the University of California, Berkeley. Prior to his interest in stem cell and developmental biology, Dr. Nicholas was a member of the research team at Sugen.

Neurona Therapeutics

Neurona was conceived in 2008 to realize the therapeutic potential of neuronal cell-based therapy. The rationale for pursuing this translational effort was based on many years of rigorous scientific discovery. In the late 1990’s, co-founders John Rubenstein, MD, PhD, and Arturo Alvarez-Buylla, PhD, were among the first to demonstrate that interneurons, a type of nerve cell, in the cerebral cortex mostly originate from precursor cells in the medial ganglionic eminence (MGE), a transient structure during fetal brain development. In these early studies, MGE cells were isolated from fetal mouse brain and injected into the brains of post-natal mice. In contrast to other neural stem and progenitor cells from neighboring fetal brain regions that remained as large cellular masses post-injection, the MGE cells rapidly dispersed away from the injection site and appeared to seamlessly integrate into juvenile and adult mouse recipient brain tissue. The injected MGE cells appropriately matured into various sub-lineages of cortical interneurons that secreted GABA, the major inhibitory neurotransmitter in the central nervous system. Electrophysiology confirmed these cells to be functional neurons that both received and formed synapses, validating their integration post-transplant. The interneurons persisted long-term following transplantation. Moreover, the transplanted interneurons augmented functional inhibition in the brain regions where they were placed. Therefore, MGE interneuron precursor cells had unique properties that could be advantageous if developed into a transplantation cell-based therapeutic. These cells could potentially provide targeted inhibition to hyper-excitable neural networks in relevant neurological disorders. Rather than acting as a transient point source of GABA or a drug pump, the injected interneuron precursor cells integrated into neural circuitry, possibly allowing for stable repair of the injured nervous system.

To investigate the therapeutic potential of interneuron cell transplantation therapy, we first injected mouse MGE precursor cells into multiple rodent models of epilepsy, Parkinson’s, and Alzheimer’s disease. Although their etiologies are largely unknown and progression is divergent, these disorders can be associated with neural hyper-excitability and have overlapping co-morbidities. We collaborated with preclinical animal model experts in these disease areas, and, indeed, we found that the injected cells were effective. The injected MGE cells matured into inhibitory interneurons and virtually eliminated seizures, improved motor function, and reduced cognitive impairments, respectively.

In each of these animal models, the MGE cells were injected into forebrain regions where MGE-type interneurons would normally reside during endogenous brain development. To our surprise, the MGE cells also integrated into ectopic regions of the central nervous system, regions they do not normally populate during development. In collaboration with Allan Basbaum, PhD, mouse MGE cells were injected into the mouse spinal cord where they matured into inhibitory cortical-type interneurons and synapsed with resident spinal cord neurons. The mouse MGE cells were next injected into the mouse spinal cord after a sciatic nerve injury. Sciatic nerve injury produces chronic neuropathic pain that is associated with a loss of GABAergic inhibitory tone in key sensory pathways. This loss of inhibition leads to hyper-excitability of sensory neurons that send pain signals to the brain. The delivery of GABAergic inhibitory interneurons into the spinal cord was able to provide missing inhibition, rebalance sensory circuits, and suppress pain hypersensitivity. The transplanted interneurons achieved a complete rescue, reducing pain sensitivity to pre-injury levels without any observable side effects. Rather than a transient treatment of symptoms, the interneuron cell therapy was truly disease modifying by addressing the underlying pathophysiology of neuropathic pain following the administration of a single dose of cells. In addition, the disease modifying activity persisted long-term for six months post-transplantation, as long as was studied in a mouse. Dr. Basbaum’s laboratory has subsequently shown that interneuron cell therapy can be similarly effective at rescuing experimental pain hypersensitivity in mice following trigeminal nerve-injury or chemotherapy.

All of the studies above were performed with mouse MGE interneuron precursor cells. However, a human cell source is required to facilitate the translation of an interneuron therapeutic for patients. Since the MGE structure disappears before birth and human interneurons in the adult brain are not accessible, we turned to human pluripotent stem cell (hPSC) lines. These hPSC lines can be expanded to meet clinical demand and can be coaxed into becoming virtually any cell type in the body. We developed methods to direct hPSCs into the MGE-type interneuron lineage in petri dish cell cultures. These human interneurons produced in petri dishes were then isolated and provided to collaborators at UCSF for testing in many of the preclinical animal models described above. Encouragingly, Dr. Basbaum found that version 1.0 of the human interneurons also could reduce pain hypersensitivity in the sciatic nerve injury mouse model. Arnold Kriegstein, MD, PhD, in collaboration with another laboratory, next demonstrated that the human interneurons mitigated neuropathic pain and bladder dysfunction following spinal cord injury in mice.

Based on this body of work, Drs. Rubenstein, Alvarez-Buylla, Kriegstein, and I officially launched Neurona Therapeutics in early 2015 to develop neuronal cell-based therapeutics, starting with interneurons. We have assembled an all-star team of 35 researchers from around the world to advance this technology toward the clinic. We believe that multiple neurological disorders are associated with interneuron dysfunction and/or imbalances in neuronal activity. Because they do not innately regenerate, stem cell technology is required to generate inhibitory interneurons to re-balance the nervous system. Technology to produce human interneurons was developed at UCSF using research-grade stem cell lines, materials, and methods. The company is now tasked with extending this work and developing clinical-grade product candidates. We have made tremendous progress and continue to passionately pursue regenerative neuronal cell-based therapies with the potential to successfully treat patients who have neurological disorders.

The Facial Pain Research Foundation

Dr. Michael Pasternak and Elizabeth Cilker Smith introduced me to the Foundation. They were familiar with Neurona’s efforts from our collaboration with Dr. Basbaum. I was immediately impressed with the progress being made by the Foundation, its ability to raise important research dollars, and the selective investment of those funds into breakthrough facial pain research efforts that are making critical advances. I was equally struck by Michael and Beth’s passion, dedication, and determination to find a cure - attributes undoubtedly shared by all who contribute and volunteer at the Foundation and responsible for its success thus far.

Neurona and the FPRF share a bold vision to achieve pain-free disease modification. Neurona’s mission is, in part, an extension of Dr. Basbaum’s work funded by the FPRF. We continue to develop a human inhibitory interneuron therapeutic for the treatment of neuropathic pain syndromes. We are pleased to be formally acquainted with the Facial Pain Research Foundation and look forward to an ongoing relationship.

CODA Joins Facial Pain Research Foundation

International Scientific Consortium

By Michael Pasternak

I am excited to say on New Years Day 2018, The Facial Pain Research Foundation (FPRF) has six Foundation and two corporate funded scientific research projects actively working to find the cure for trigeminal neuralgia and related neuropathic pain. The scientists working on these projects are members of our International Scientific Research Consortium. In the past this World Famous WebNewspaper has printed numerous stories about the Foundation funded projects (see Dr. Douglas Andersons 2017 Report). In October, 2017 the FPRF announced that Neurona Inc. (a corporate funded research project joined the FPRF Scientific Consortium. Neurona is focused on the discovery and development of cell-based therapies to treat intractable neurological diseases including TN and related neuropathic pain. Today the Foundation is pleased to announce that CODA, another corporate funded scientific project, is joining the FPRF International Research Consortium.

CODA Biotherapeutics is a San Francisco based pre-clinical stage biotechnology company developing a novel therapeutic platform for the treatment of chronic pain and other severe neurological disorders. CODA’s innovative platform relies upon a gene therapy approach to modulating aberrant neural activity, which CODA’s co-founders -- a team of forward-thinking biotechnology entrepreneurs, scientists, and clinicians -- believe will provide relief to patients suffering from intractable neuropathic pain such as that associated with trigeminal neuralgia and establish a new treatment paradigm for severe neurological disorders. The entire CODA team enthusiastically welcomes the opportunity to join the Facial Pain Research Foundation’s Scientific Consortium in developing new treatment options for patients with trigeminal neuralgia.

Building upon the groundbreaking work of the company’s founders and Scientific Advisory Board members, several of whom have been associated with FPRF, CODA is using advanced synthetic biology approaches to engineer novel neurotransmitter receptors that respond selectively to non-addictive and non-opioid-based small molecules. These engineered neurotransmitter receptors are delivered to pain-signaling neurons using viral vectors by standard of care neurosurgical procedures. Hyperactive target neurons that express the receptor, including those in the trigeminal ganglia, can then be controllably silenced by oral administration of the safe small molecule. Because the treatment molecule exclusively activates the receptor, it is possible to achieve highly selective blockade of the critical pain signals from reaching the brain. This effectively opens the “therapeutic window”, reducing the potential for adverse side effects. Preclinical studies in multiple neuropathic pain models have demonstrated that this technology provides robust, durable, tunable, and reversible pain control, without the side effects experienced with existing small molecule therapies (e.g. opioids, anticonvulsants, tricyclic antidepressants) or neurosurgical procedures (e.g. ablation, neurostimulation implants). CODA anticipates that this technology will be used to manage intractable chronic pain across a multitude of conditions, including trigeminal neuralgia, and it will be applied broadly to other peripheral and central nervous system disorders in the future.

Genetics Study

Finds Genes That Cause Trigeminal Neuralgia

Introduction by Michael Pasternak

In 2012 The Facial Pain Research Foundation approved a research study to find the genes responsible for trigeminal neuralgia.

While each of our Foundation’s scientific projects are valuable, the one that has been the most awesome and challenging for me has been the Genetics/DNA project. Dr. Doug Anderson (FPRF Director of Research) and I have had to communicate with scientists from four different countries (including Joanna Zakrzewska in London) and Collection Centers in 9 different cities in three countries! Doug has spent months on this project “everyday”! He has also had to communicate with additional scientists interested in our efforts and has done this while still overseeing the creation and development and evaluation of all of our Foundation’s other projects! How did we and he get so lucky?

While Doug has overseen and worked through the science some of our other Volunteers have been involved in working with the DNA Collection Centers, working through intellectual property problems, legal questions, raising the funds to pay for all of this, communicating to patients to give their DNA, creating PR pieces for the public to participate, keeping track of collection numbers, certifying completion of collections and data sent to OHSU and Rutgers, and making payments to the Collection Centers for their efforts. This project has been an enormous accomplishment. No Volunteer Foundation or organization has ever done this before! All completed while we grew our outstanding scientific project numbers to six and linked with two venture capital funded research projects.

The FPRF has spent over $650,000 of funds raised by our Volunteers and donors on this project. The FPRF Trustees have committed another $325,000 to complete the project in the next year.

So, now we have a team of scientists who have worked hard using their unique skills and understandings and have presented a report to our Trustees and asked to go forward to replicate the study during the next year to prove that what they have found are really the genes that will lead us to finding the cures. The Cilker Genetics/DNA Research Report has arrived. It is remarkable. We are extremely thankful to Drs. Devor, Burchiel, Seltzer, Diehl and Anderson for all of their voluntary efforts to create these findings. We are also truly thankful for Our Trustees and all of our Volunteers who helped raise the necessary funds to complete the tasks. This is an exciting time for all of us committed to ending the pain for all TN and related neuropathic sufferers.

The Following is a Non-Technical Summary Report…The detailed full Scientific Report has been presented to the Foundation Trustees and contains confidential information. It will be confidential until the replication of findings has been completed. Following the report is an article by Dr. Scott Diehl for general distribution.

Genome-Wide Association Study

Of Trigeminal Neuralgia Type 1 (TN1)

The William A. and Leila A. Cilker

Research Project

A Report Prepared for the Board of Trustees of the Facial Pain Research Foundation by Kim J Burchiel, MD (Oregon Health and Science University), Marshall Devor, PhD (Hebrew University of Jerusalem), Scott R Diehl, PhD (Rutgers Biomedical Health Sciences), and Ze’ev Seltzer, DMD (University of Toronto)

Findings and Future Plans – Non-Technical Summary

The main goal of our study is to find genes that cause “Classical” Trigeminal Neuralgia Type 1 (TN1). This information will help clinician-scientists find cures that relieve patients’ severe chronic pain or prevent it from developing. Thus far, we’ve searched the genetic material (DNA) of TN1 patients at over a million places where people are known to differ from one another in their DNA letters (A, T, G or C). On average, any two people have about five million DNA differences between them. Most differences have no effect on health, but some cause or predispose to disease. Our challenge is to find the “needles in a haystack” that cause TN1, hidden among the millions of differences with no relation to TN1. We do this by comparing DNA of TN1 patients (cases) with that of people who do not have TN1 (controls).

Our initial search focused on 348 Caucasian TN1 patients, a modest sample size for human genetic studies today. Nevertheless, we are delighted to report discovery of several regions in the human genome with promising evidence they may harbor genes causing TN1. Some regions include only one gene, but there are 17 genes in the genome location with the strongest statistical support, including 3 with biological functions involving nerve degeneration, excitability of neurons or responses to nerve injury. These genes are strong suspects, but to determine which genes actually cause TN1we need a combination of: a) more genetic data of the kind we have already been gathering, and b) information from a complementary approach that uses high speed DNA sequencing. This further research is absolutely necessary before our initial discoveries are ready for testing in animals or translation to the clinic.

First, we must be absolutely certain our TN1 patients and controls do not happen to be very different by chance alone, but that the DNA differences occur because mutations hidden in the regions actually cause TN1. To do this, we will repeat our experiment a second time and see if we get the same results. We will analyze variation across the human genome for a new set of TN1 patients and controls using the most advanced genomic assays now available, more than doubling our sample size. If the same genome regions are again different in TN1 patients compared to controls (like lightning striking in the same place twice), this replication will confirm that TN1 disease-causing genes are indeed located there. Some regions have initial statistical support stronger than others, so these are more likely to be confirmed, but only by doing the assays and carefully evaluating what the data tell us will we know for sure which regions are confirmed. We do not expect all of our initially positive regions to be confirmed, but even if only one region is strongly confirmed this will be an extremely important advance, not only for TN1 but for the entire biomedical field of neuropathic pain in general. 2 Submitted January 3, 2018

Moreover, it is not enough to just find regions of the genome that harbor genes that cause TN1 – we also have to identify the specific genes and mutations in these genes that cause them to biologically malfunction, as this information is essential for translation to new therapies. It is possible that some of the mutations that cause TN1 are extremely rare, found only in TN1 patients and their close relatives. To discover additional TN1 genes and TN1-causing mutations, including those that are very rare, we will use the latest technologies for “reading” the DNA sequence of the entire human genome in a select subset of our TN1 patients. This method is called Next Generation Sequencing (NGS), and we propose to perform this assay for 100 TN1 patients.

Combining our previously-studied as well as our new TN1 cases gives us a sample of approximately 900 TN1 cases, of mostly Caucasian racial origin but with some non-Caucasians included too. Combining these with a similar number of controls will provide us with substantially increased statistical power to ask several very important questions such as the following: Do different genes cause TN1in young patients versus those who experience their first symptoms when older? (We already started to ask this first question in a limited way in the first phase of our research and with a larger sample can address this more rigorously.) Are there different genetic effects in males versus females, as found in many other genetic diseases? Are there different genes causing TN1 in the (typically younger) patients without vascular compression of their trigeminal nerve compared to patients whose trigeminal nerve has been damaged by years of vascular compression?

Our research may lead to a more complex picture of TN1 as being caused by not just mutations of just one gene, but in fact mutations found in several different genes may be associated with various subtypes of TN1. Genetics may reveal TN1 clinical subtypes that we currently do not even recognize exist, as has been found in numerous other neurological conditions including the epilepsies and the many forms of ataxia caused by different genes. While our primary goal remains identifying gene mutations that cause TN1, the research described here for the next phase of our study may also identify genetically distinct subgroups of TN1 patients as a very important secondary benefit of our genetic approach. Progress towards a cure (or, more likely, “cures”) will be more rapid and have greater chance of success if it is built on a foundation of knowledge about what is really going on biologically in different TN1 patients rather than if forced into a “one size fits all” therapeutic approach.

Project Timeframe: With adequate funding all research can be completed within one year. 3 Submitted January 3, 2018

Genetics Study

Brings Precision Medicine

To Trigeminal Neuralgia

By Scott Diehl

The Genetics Study team supported by the Foundation has completed a search of over one million locations in the DNA of 348 Trigeminal Neuralgia (TN) patients. This “Big Data” effort has pointed to genes affecting excitability of neurons, nerve degeneration and responses to nerve injury. These genes are very strong suspects, and the team will now gather additional information from more patients and from a complementary approach that uses high speed DNA sequencing.

In the team's next effort, these genes will be tested in a new set of TN patients.

If the same results are found again, this replication will be like lightning striking in the same place twice and confirm that mutations in these genes cause TN in some patients. These next steps are essential to confirm the initial findings and they may also reveal additional genes not detected with a strong enough signal in the initial search. Once confirmed, these discoveries will then be ready for testing in animals and translation to patients in the clinic.

The genetics data gathered thus far are painting a complex picture of TN as being caused by not just mutations in any one gene. It appears more likely that several different genes are involved in different patients, a phenomenon known as “genetic heterogeneity.” For example, one of the most strongly supported genes is important only for TN patients whose symptoms first appeared after age 55. A different gene with different biological functions is implicated in patients who developed TN at a younger age. Genetic heterogeneity has been found in other neurological conditions including the epilepsies and the many forms of ataxia caused by different genes. This strategy, known as Precision Medicine, is a major US and International effort getting underway focusing on nearly all human health problems today (https://allofus.nih.gov/).

While the primary goal of the genetics study is to identify gene mutations that cause TN, this research may also identify genetically distinct subgroups of TN patients as a very important secondary benefit. Progress towards a cure (or, more likely, “cures”) will be more rapid and have greater chance of success if built on a foundation of knowledge about what is really going on biologically in different TN patients rather than if forced into a “one size fits all” therapeutic approach.

The Genetics Study Team supported by the Foundation is an international collaboration of leaders in the fields of neurosurgery, pain biology and human genetics at Oregon Health and Science University (Dr Kim Burchiel), The Hebrew University of Jerusalem (Dr Marshall Devor), the University of Toronto (Dr Ze’ev Seltzer) and Rutgers School of Dental Medicine (Dr Scott Diehl). Numerous additional locations have provided valuable assistance with recruiting patients.

First Published Sept 23, 2014

We’ve come a long way! Join us and make our journey shorter!

By Roger Levy

Back in 1990, when the Trigeminal Neuralgia Association was first organized, its growth and development depended on the volunteer founders and some leading neurosurgeons who were concerned that little was being done to help patients understand their condition and gain access to specialists who could treat their condition. The Internet had yet to develop and getting the word out was managed through support groups started by volunteer patients who had become acquainted with the Association.

As time went on and the number of patients who looked to the Association for information and support began to grow so did the association’s awareness of the limitations which affected the medical and surgical options available as treatment. The drugs, after all, do nothing but dull the pain and most of the surgical procedures involve permanent damage to the nerve and that damage can often result in increased and, sadly, inoperable pain if the procedure fails. Gamma Knife treatment which involves radiation is promoted by many centers as non-invasive and yet there are too many patients who have increased pain where the radiation treatment failed. Even microvascular decompression which has a high success rate and involves no permanent damage to the nerve has its limitations because it involves a hospital stay and general anesthetic, for which some patients are not candidates either through choice or some other medical condition.

Still, over the years, the Association has helped many tens of thousands of patients to gain relief and regain a good quality of life. This is an important and continuing part of the Association’s mission on which it continues to deliver. But what of tomorrow’s patients or those today with unresolved pain? What’s to be done about them?

That is a question which the Association began to address when your Founding Trustees, Michael Pasternak, Mike Hirsch and I were members of the Association’s Board. Faced with that challenge, we embarked on an ambitious plan to establish a facial pain research program at the McKnight Brain Institute at the University of Florida, where Doug Anderson, Foundation trustee, was then the Executive Director. However, raising sufficient funds for research and meeting other parts of the Association’s mission was too great a challenge. Thus we chose to establish The Facial Pain Research Foundation.

That was over two years ago and look how far we have come! In a short period of time, The Facial Pain Research Foundation has raised over $1,300,000 and has provided funding for 4 separate research projects intended to find a permanent end to the pain of trigeminal neuralgia. Now, as word gets out across the internet via our Web Newspaper, people are contacting us from all over the world to ask “How can we help?” - Something unimaginable in 1990. When I was diagnosed with TN in that year, there were few places to turn. My neurologist could only recommend Tegretol or, when I proved allergic, acupuncture. Surgery, he warned me, was to be avoided at all costs. It was not until 1997 that the internet lead me to the Association and to a quick path to relief through microvascular decompression. Even with all those years of pain, though, I count myself lucky now that I am pain and medication free. Not every patient enjoys that success and for them and the patients who have yet to come, the work of the Foundation is imperative.

If you are reading this, chances are you are doing so because of the reach of the internet and, so rather like the support groups of the ‘90s, you have the opportunity to support our cause and bring our journey to a successful conclusion more swiftly. You can help in many ways as you can read elsewhere in our Newspaper, including making a financial contribution. Contributions are now coming to us almost daily with words of support and encouragement. No amount is too small to win our gratitude or to help.

We have world class scientific investigators enthusiastically working on behalf of facial pain patients, without national or other boundaries. They are our researchers “sans frontieres” and the benefits of their research will similarly lack borders. We are a community brought together by common cause. Be part of that community and help us to achieve our goals.

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