Patient advocates and top national experts in trigeminal neuralgia, a chronic pain disorder that causes intense pain to the face, met at UF on March 7 and 8 to present the latest scientific findings and discuss how to pursue new treatments.
“Today we’re on the edge of discovery, and that’s exciting for us,” said Michael Pasternak, Ph.D., a founding trustee of The Facial Pain Research Foundation, which hosted its biannual meeting with support from UF’s McKnight Brain Institute.
Approximately 400,000 Americans are affected by trigeminal neuralgia, a disorder of a nerve at the side of the head that can cause sharp, stabbing pain in the jaw, cheek, forehead, scalp, nose, eyes and lips.
The meeting united neuroscientists, neurologists, neurosurgeons, electrophysiologists and gene therapists. Among the attendees were MBI director Todd Golde, M.D., Ph.D.; Douglas Anderson, Ph.D., chair emeritus of UF’s department of neuroscience and former MBI director who serves as a trustee of the Facial Pain Research Foundation; and Lucia Notterpek, Ph.D., current chair of neuroscience at UF.
“A unique aspect of this group is we all come from different backgrounds and we all bring different scientific expertise to this meeting,” Notterpek said. “The discussions are trying to better understand trigeminal neuralgia so we can work on therapies and help people. Surgeries work for some people to alleviate the pain, but some people go through multiple surgeries and are still in horrible pain.”
Among the patient advocates at the meeting was Elizabeth Cilker-Smith of Los Gatos, California, who suffered from trigeminal neuralgia for six years before undergoing successful micro-vascular decompression surgery.
“With trigeminal neuralgia, you can’t talk, you can’t eat, and the focus of all your energy is directed to how severe and awful that pain is,” she said. “The pain is so severe at its peak that all you want to do is crawl up into a ball, and then when it goes away, the fear that it might come again captivates your mind so you actually go through episodes of panic.”
Cilker-Smith is now a trustee of the Facial Pain Research Foundation, which was founded in 2011 to raise awareness of the great unmet medical need presented by trigeminal neuralgia and ardently work to pursue new therapies and, ultimately, a cure.
With passionate advocates such as Cilker-Smith and Pasternak, an entrepreneur who co-founded the world’s largest retail hosiery company and himself suffered from trigeminal neuralgia, “you are motivated and reminded that it’s not just science — it’s about making our science actually benefit people’s lives,” Golde said.
For more information on the Facial Pain Research Foundation, click here.