Facial Pain Research Foundation
aims to turn a page in history
by finding a cure for the world’s most excruciating pain
Finding a cure for trigeminal neuralgia, the most painful disorder known to humans, is the
mission of The Facial Pain Research Foundation. Its founders aim to reach the goal within
the decade of 2011-2020, while also developing therapies to permanently stop other
nerve-generated facial pains and diseases.
The Foundation is the brainchild of seven professionals across the United States, who are
creating the first international force of scientists to work together to cure an ancient, but poorly
understood disease. Finding a cure will restore pain-free life to millions of men, women and
children around the world, who are stricken by repeated lightning-like shocks of facial pain,
the hallmark of trigeminal neuralgia. A simple cool breeze across the face, a slight touch or
even a kiss on the cheek can trigger shooting pains that drive victims to their knees and
may last a lifetime.
Trigeminal neuralgia was first identified in the 11th century, yet it remains frequently
misdiagnosed and inappropriately treated, in many cases resistant to the best available
therapies, and tragically linked to depression, fear, fatigue and suicide. The pain has a bizarre
“hit and run” behavior; it strikes near the eyes, nose, lips, ears or teeth, sometimes disappears
for days, months or longer, then returns. The pain seems to come out of nowhere with
a stabbing intensity that stops life in its tracks and draws full attention to the need to find relief.
To conquer the problem within ten years, the Foundation has formed an international consortium
of eminent scientists, starting at the University of Florida’s McKnight Brain Institute and the
University of California San Francisco, to conduct studies aimed at translation from laboratory
to patient. Participating scientists will report outcomes at Foundation conferences and public
forums. In the process, they will expand public awareness of what has been a global silent
epidemic of facial pain.
“Some say it takes years and years to find a cure for a disease as complicated and unpredictable
as trigeminal neuralgia, but America put a man on the moon in less than a decade after our
President called for it to be done,” said Myron Hirsch of Naples, Fl., a founding trustee and
former president of the TNA-Facial Pain Association. (In 1962, John F. Kennedy announced,
‘We choose to go to the moon in this decade,’ and seven years later, on July 20, 1969,
Neil Armstrong walked the face of the moon.)
While Hirsch does not compare curing nerve damage to putting man on the moon, he
expresses confidence that a cure can be achieved in 10 years by a united force of premier
scientists around the world working collaboratively toward the goal. Major attention will be
focused on the trigeminal (three-part) nerve that energizes facial feeling and functions, and on
how the nerve and its protective coating, known as myelin, are damaged in ways that lead to pain.
“Our search for a cure is preceded by a long circuitous trail of medical and surgical advancements
that have fallen short of permanently stopping the pain without medications or complications,”
said Michael Pasternak, Ph.D., of Gainesville, FL., a founding trustee and former president
of the TNA-Facial Pain Association. “We must fix this nerve for those suffering now,
and for future generations.”
Pasternak, whose terrorizing trigeminal neuralgia pain was halted after microvascular
decompression surgery in 1992, said only 50 to 75 percent of individuals with the typical
textbook type of TN gain long-lasting pain relief through surgery, medications or non-conventional
therapies such as acupuncture and chiropractic adjustments. Many of those who become
pain-free after surgery suffer recurrent pain months or years later, indicating new damage
in other parts of the nerve!
Neurosurgeon Albert Rhoton Jr., M.D., a Foundation trustee who treated more than
3,000 patients with trigeminal neuralgia before retiring from 40 years of surgical practice
at the University of Florida, says it is time to find a cure. Rhoton, who still jets around the
world to aid the teaching of neurosurgeons, said, “The past (regarding trigeminal neuralgia)
has been filled with medicine, often toxic medicine, and risky surgery with failures and
recurrences. This is the first time in my lifetime that a group is really going for a cure.”
Poor public awareness of trigeminal neuralgia has been attributed to the fact the disease
is rarely visible and is not fatal. Unlike cancer and heart attack, which claim many lives,
people with TN suffer pain that progressively worsens and attacks more often. Many
patients abandon their careers, social life and recreation, and isolate themselves at home.
“Over the last 20 years, we have rescued thousands of patients from the obscurity
of trigeminal neuralgia through education, outreach and personal contact,” said Roger Levy,
a founding trustee and immediate past chairman of the board of TNA-The Facial
Pain Association. “However, in that period we have seen no major breakthrough in
treatment, let alone a cure.
Through the Foundation, we will drive the direction of research, and work to increase
the pace at which discoveries are reported and shared among lab scientists,
clinicians and patients.”
The first projects undertaken through the scientific consortium are directed by two
nationally known, award-winning scientists dedicated to pain research: Neuroscience
Professor Lucia Notterpek, Ph.D., at the University of Florida’s McKnight Brain Institute and
Neurobiologist/Anatomist Allan Basbaum, Ph.D. at the University of California San Francisco.
Notterpek seeks to develop genetically altered mice as the first validated animal model of
human neuropathic facial pain—a model long needed for basic studies on pain mechanisms
and the preclinical testing of new treatments. She and Andrew Ahn, Ph.D., a neurologist
and facial pain expert, are treating mice with new pharmaceutical molecules designed to halt
nerve deterioration, and are measuring their effectiveness in reducing responses to pain stimuli.
Eminent neuroscientist Douglas K. Anderson, Ph.D., former Director of the McKnight Brain Institute
and trustee of the Foundation says: "The fundamental problem we confront in research is why
the trigeminal nerve goes bonkers, why excellent corrective surgery ends the pain for some
patients, but not for others, why the best available pain-relieving medications help some and
not others, and why many patients gain no lasting benefit from any conventional or alternative
therapy." Anderson said he is optimistic that a breakthrough in the treatment of trigeminal
neuralgia, the most extreme facial pain disorder, will reveal therapeutic approaches worth
evaluating in the treatment of other nerve diseases, which might include multiple sclerosis.
At UCSF, Dr. Allan Basbaum’s studies in mice are aimed at solving one known cause
of facial pain: the apparent loss of chemical mediators that normally inhibit the transmission
of pain signals to the brain. In a unique approach, he is transplanting nerve cells that
secrete these inhibitory chemicals into the trigeminal area of hyperactivity. The goals
are to introduce these healthy cells into the areas of the brain influenced by nerve damage,
and to have them fully accepted as an integral part of normal nerve circuitry where they will
be expected to normalize the inhibition of pain signals traveling to the brain.
London physician Joanna Zakrzewska, M.D., who directs the largest orofacial pain clinic
in the United Kingdom and is studying the epidemiology of neuropathic facial pain and how
to measure pain more precisely, is the Foundation’s international neuroscience coordinator.
She is a professor of pain in relation to oral medicine at the Barts and the London Queen
Mary’s School of Medicine and Dentistry at the University of London. She is author of four
books, including INSIGHTS: Facts and Stories Behind Trigeminal Neuralgia for consumers,
and Orofacial Pain, a new guidebook for health-care professionals.
The Foundation’s founders share a history of close encounters with facial pain or with patients
in pain, and share a passion for stopping the pain. Together, they bring to the board room
some 200 years of accomplishments in business, medical science, law, writing, public relations
and marketing, teaching and publishing. In addition to Anderson, Rhoton, Pasternak, Hirsch
and Levy, the trustees include Suzanne N. Grenell, a creative writer, poet and motivational
speaker in Scottsdale AZ, and Jay Winer, independent public relations/marketing consultant
in Asheville, N.C.