Michael Pasternak, Ph.D., is a founding trustee of the Facial Pain Research Foundation. Dr. Pasternak
spoke by telephone from Florida with Mervyn Rothstein, who was an editor and writer at The New
York Times for 29 years. Mr. Rothstein now writes the monthly "Regional Theatre" column for Playbill Magazine and is a former member of the Tony Awards Nominating Committee. His first symptoms of trigeminal neuralgia occurred in 2005.
Michael, how did the Facial Pain Research Foundation, a multimillion Dollar research foundation to find cures for trigeminal neuralgia and related neuropathic pain, become a reality?
I think, Merv, first I need to remind you that I had the pain. That I am a survivor of that facial pain. And I am in a very sought-after group to be in. Because there are few people of the thousands of trigeminal Neuralgia sufferers I’ve known that have been as pain free for as many years as I’ve been. So I feel very special. And there was a moment when I realized that it was time for us to work toward finding a cure.
I’d been involved with the Facial Pain Association, formerly the Trigeminal Neuralgia Association, for many years as a volunteer and in leadership roles after I’d stopped having the pain. I was fortunate to have a successful microvascular decompression surgery with Dr. Peter Jannetta. I had been a businessman and a college professor, and I always felt, because my mother had told me that I could, that I could be successful at whatever I wanted to do. Then, in 2009, two other members of my family got facial pain. It was at that moment that I felt that we really needed to have a cure.
For 50 years, the treatments that have been given to trigeminal neuralgia patients have worked for only some people and not for others. So I connected with several friends who had been with the Association for years – Roger Levy, who had been the chairman of the board, and Mike Hirsch, who had been the president of the association after me – and we went down to Marco Island in Florida and spent three or four days talking about how do we put together a research foundation to find a cure for TN, and for related neuropathic pain.
And that’s what we did. We brainstormed – and there certainly wasn’t a roadmap – and we decided to find some talented people, creative people, who were willing to admit they didn’t know what they were doing but were willing to pull together and create a foundation to find a cure. I approached Al Rhoton [Albert L. Rhoton Jr., M.D., founding chairman of the department of neurosurgery at the University of Florida College of Medicine], the most famous neurosurgeon in the world, and Doug Anderson [Douglas K. Anderson, Ph.D.], head of the McKnight Brain Institute at the University of Florida, and we continued to talk about what it would take to put together a foundation, and we grew it. The focus was we were going to find a cure.
How are we going to get rid of all this pain?
We’re going to get rid of it because we have found the best consortium of scientists in the world to work on it. These are outstanding scientists whom we approached, and we pulled them together, and we said, “We need your help to do this.” It’s a hell of a challenge. Imagine saying we want you to work on the most difficult problem there is – how do you stop the worst pain known to humankind? Now we have five research projects, working on different approaches to finding a cure.*
The scientists in the consortium believe in the concept of synergy, that the whole is worth more than the parts, that each group’s research supports, affects and benefits the other groups’ research. These are great minds, and I believe they’re going to do it. That’s basically our motto – we can do this. There are hundreds of scientists working on these projects in the five locations. Our goal is believable. And it’s going to happen.
Where does all the money come from to support the foundation’s research projects? How much does the foundation receive each year?
That’s a very, very good question. First, we have thousands of volunteers who have created opportunities for people to participate in fund-raising activities – everything from comedy shows to golf events to running and walking and wine-tasting, music events, the whole range. All of these are volunteer-based.
We have people who send us $1 a month and many who send us thousands of dollars a year. We also have companies like IBM that send us money. We’ve had a number of people who have given large sums of money as matching grants. The Wasdin family has given $120,000. A matching grant of half a million dollars came from the Cilker family.
There are many ways of raising money, and it’s the first time in history that people have been asked to donate specifically to stop pain. We’re going after pain. Pain is the disease here. Because if we could end the pain, we could stop the world’s most painful condition – which is trigeminal neuralgia, and the conditions related to that.
How do you get people to volunteer?
Well, Merv, how did we get you to volunteer? We asked you, and you said yes. I would guess most of our volunteers are people who are in serious pain and have been unable to resolve it with surgeries or medications, or people who have experienced the pain but have been able to resolve it or ameliorate it with procedures or medicines. Family members and friends volunteer too. They all are doing the fund-raising hunting for us. And they find us on our web newspaper, The Afternoon Edition.
Tell me about The Afternoon Edition, which is at www.facingfacialpain.org. I understand it’s the most visited of its kind. It has no advertising, and yet has so much information and is read worldwide. How does it get its stories?
The Afternoon Edition is really the brainchild of Mike Hirsch, who is the Chairman of Whitehall Printing Company. Mike had the belief that if he could create a newspaper that would speak in simple, lay person’s terms, that would explain the science and the pain, that would tell the stories of the people in pain, and that would do so in a very personal way, it would attract readers to the newspaper. And he was right.
All the stories are written by volunteers. The newspaper also shares information about all the research. And it also provides an opportunity for people who want to volunteer and become part of the foundation to do so.
What’s the toughest part of your leadership role? What keeps you awake at night?
That’s a difficult one. I would say the toughest part is the larger and larger number of people contacting us who are in horrible pain. Who are disabled. Especially those families where children have trigeminal neuralgia. That keeps me up wanting to be certain in my mind that we’re providing the support necessary for our scientists.
And also my concern that we are properly saying thank you to all those who are helping us. Sometimes I’ll pop up in the middle of the night and think, for instance, did I thank Frank Skoviera for all he’s been doing? That keeps me awake.
We’re at the point where the research is a reality. It’s over the hump. The foundation is happening. It’s no longer a question of whether it will happen. The scientists are working, and we’re waiting for the babies to be born. I go over and over in my mind, are we providing enough support for them? And are we
responding effectively to the people who are in pain and trying to keep their hopes up? Hope is important. This has been called the suicide disease by some, and you and I both know there has been a journalist
recently who took her life because of the problems related to the pain – she couldn’t stand it anymore. So dealing with those difficult situations sometimes keeps me up as well.
Why didn’t this research start many years ago?
I think we were naïve enough to think that the medical professionals – many of the neurosurgeons and neurologists – were going to solve the problem themselves. I think we were also ignorant enough that when they were giving us data – I mean outstanding surgeons, we’re not talking about quacks here, who were saying that on a good day they could fix 80 percent of the people who came into their offices – we forgot about the 20 percent, hoping we’d be part of the 80 percent.
But it became more and more important to look at that 20 percent and those whose pain returned later in spite of the surgery. We needed to also look at those who couldn’t have surgery and reacted badly to
medications. These are the people who are going on disability, who are in horrible pain. It got to the point where even though in our earliest organization we said that research as an important goal, it wasn’t research to find a cure. It was research to better understand the disease, better understand how it affected patients. But it became apparent that we simply had to change, that we had to focus on the cure. It just took us time. I think we believed it was going to happen, but it didn’t happen.
At one point, we brought together seven neurosurgeons and neurologists in a room and interviewed them and asked them what they would do if we gave them all the money they needed to cure trigeminal neuralgia, and they didn’t have a clue. So we understood that we were speaking to the wrong group. That we really had to speak to the scientists and get to the basic science of what’s causing this problem in the nerves and the brain. And that’s what we’re doing.
How do you respond when someone asks you if the foundation’s research projects are really going to find the cure? What do you say to health professionals who say that there can never be a cure for trigeminal neuralgia and related neuropathic pain?
For the health professionals, I just ask them what planet they live on. In pretty much the last hundred years, it’s not much more than that, we’ve learned how to fly, created the Internet, found a cure for polio. One of our major reasons for starting the foundation was Mike Hirsch’s talking about President John F. Kennedy, who said let’s put a man on the moon in the next 10 years. Think about it, Merv. If you could put a man on the moon in 10 years you sure as hell ought to be able to fix a nerve in 10 years. That’s been one of our driving forces. It’s let’s get it done. Get the necessary resources together. Be very focused.
I’ve had some health professionals look me in the eye and say the only one who can solve this problem is God. And sometimes I feel like telling them, look, God put Al Rhoton and Mike Hirsch and Doug Anderson and the rest of us on this Earth to solve this problem. And we’re here and we’re going to get this done.
The Facial Pain Research Foundation Consortium
* “Nerve Myelin Repair and Growth,” Dr. Lucia Notterpek, University of Florida McKnight Brain Institute; “Cell Replacement Therapy as a Treatment for Injury-Induced Neuropathic Pain,” Dr. Allan Basbaum, University of California, San Francisco; “Finding the Genes that Predispose to Trigeminal Neuralgia,” Dr. Marshall Devor, Hebrew University of Jerusalem, Israel, Dr. Kim Burchiel, Oregon Health & Science University, Dr. Ze’ev Seltzer, University of Toronto; “Mapping Towards a Cure:
Identification of Neurophysiologic Signatures of Trigeminal Neuralgia Pain,” Dr. John Neubert, Dr. Mingzhou Ding, Dr. Marcello Febo, Dr. Robert Caudle, Dr. Todd Golde, University of Florida McKnight Brain Institute; “Novel Ways to Deliver Compounds That Can Eliminate the Pain of Trigeminal Neuralgia,” Dr. Wolfgang Liedtke, Duke University. Dr. Scott Diehl, Consultant, Rutgers University.
Facial Pain Research Foundation International Research Coordinator Dr. Joanna Zakrzewska, UCLH NHS Foundation Trust, London UK.