A forum like Living with TN accomplishes many purposes in mutual support and information. I’ve been talking with face pain patients in places like this for over 15 years, as well as writing in various Internet venues. Today, I’d like to share something here that I’ve also recently posted at the TN Association (Face Pain Association) website, in one of their blogs. I hope that others here may find this to be a source of hope over the long term.
Those who live with face pain may not always be condemned to look for only short term measures to manage the pain. Work is now beginning on therapies which offer hope of permanent pain relief. It likely won’t happen this year or the next. But some important new developments are emerging.
I would like to draw the attention of Forum participants to an article that I think is relatively important in the long-term future of TN research. In the Fall 2009 Issue of TN Alert (the newsletter of the TN Association), there is an article by Lucia Notterpek, Ph.D., Dennis Steindler, Ph.D., and Douglas Anderson, Ph.D. titled "Does the Answer Lie in Stem Cells or Gene Therapy? The authors summarize work they are doing at the McKnight Institute at the University of Florida, to investigate stem cells, gene therapy and neuro-protective small molecules as possible agents for the repair of myelin damaged by TN or other facial neuropathic pain.
See http://www.fpa-support.org/newsletter/TNAlertFall09-d7-screen.pdf and page down to page 5.
I sent an email inquiry last week to Doctor Notterpek, requesting a copy of the protocols for animal studies that I understand are now underway at McKnight. Their team is now investigating whether a particular gene is associated with a susceptibility to TN pain in lab rats. I haven’t heard anything back yet, but I will post results when I can.
I have also recently had my attention drawn to another website which is sponsoring research in myelin repair: The Myelin Project was founded by the parents of a boy who suffered from a genetically inherited disorder that causes deficiencies in the formation of myelin and causes painful degeneration of the nervous system, ending in death. This disorder is one of a class of medical problems called “Leukodystrophies”. Although Multiple Sclerosis appears to be an acquired rather than solely genetic disorder, the disease also appears to be a candidate for some of the same therapies.
The story of the efforts of this boy’s parents to cajole, agitate and when necessary to outright shame medical researchers into thinking outside the box toward a cure for his disease, has been captured in the movie “Lorenzo’s Oil”, starring Susan Sarandon among others. Efforts of the Myelin Project have resulted in at least one treatment that has been proven to stop demyelination among a sub-group of patients who would otherwise die because of it. Not all of the pieces of that puzzle are in place yet, but there is progress.
For several progress reports on research being sponsored by the Myelin Project please see: http://www.myelin.org/2008-news-from-the-laboratory/ . I also sent inquiries last week to several of the officers and principal research investigators of this organization, but so far I’ve not heard anything back. I will post when I do.
I am becoming convinced that gene therapy for direct myelin repair may well prove to be the most promising avenue of fundamental research for permanent pain relief in people who deal with facial neuropathic pain. There is much to do before we get out of the animal model stage. But work is beginning. A major missing ingredient from the equation for cure seems to be MONEY from organizations affiliated with NIH. I am hopeful that TNA and other patient centered organizations will soon step up to the plate and begin direct contacts with NIH to correct this deplorable condition of research neglect. I have every intention of participating in highly visible public agitation, to encourage this improved outcome.
Go in Peace and Power,
Red
R.A. “Red” Lawhern, Ph.D.
http://www.lawhern.org
"Giving Something Back"