Putting a Smile on Facial Pain through Research
By Roger Levy, Founding Trustee: The Facial Pain Research Foundation
The Facial Pain Research Foundation (Foundation) has made an impressive entry into the research
arena following its establishment as a division of the Facial Pain Association (Association) in
August 2010. The Foundation has now provided seed funding for three research projects
and is gearing up to fund a fourth.
The Association actually began its research initiative in 2005. Prompted by a suggestion from
Dr. Albert Rhoton, then Chairman Emeritus of the Department of Neurosurgery at the University
of Florida (UF), the Association began a dialogue with Dr. Douglas Anderson, then acting Executive
Director of UF’s McKnight Brain Institute, about research to discover whether, in Al Rhoton’s words,
“an itty bit of stem cell” could be used to repair a damaged trigeminal nerve. This led to the
creation of the Facial Pain Research Institute (FPRI), the Foundation’s predecessor, and an
agreement with the University of Florida and the McKnight Brain Institute to establish a research
program to discover a cure for trigeminal neuralgia and related conditions.
Back then, the State of Florida had a matching gift program whereby the State would provide
a 100% matching grant for a gift made to a university and it was the intention, with the university’s
help, to create a permanent endowment, the income from which would fund a facial pain research
faculty at the Brain Institute. FPRI received seed funding of $100,000 from two of its Board
members. This was followed by a further $122,500, specifically for research, raised at the 2006
National Conference, where a special session moderated by Suzanne Grennel elicited 11 gifts
from an enthusiastic group of supporters consisting of Association Board members, Medical
Advisory Board members and support group leaders, including one from Australia.
This contribution was then placed by FPRI with UF and was accompanied by a further gift
to UF of $120,000 from Tom and Susie Wasdin. The combined gift of $242,500 was held and
invested by the UF Foundation pending the grant of a matching gift from the State of Florida.
Unfortunately, the 2008 financial meltdown intervened and reduced the funds held by the
UF Foundation by 20%. The prospects for the State of Florida match then evaporated
as Florida faced its own budget crisis.
In the meantime, Dr. Lucia Notterpek had joined UF as Chair of the Department of
Neuroscience and had begun a research program to discover whether a particular gene,
PMP22, could be used to repair damaged myelin, a possible cause of facial pain. The Association
Board then decided to switch strategies. Rather than build a permanent endowment in a
difficult investment environment when charitable contributions were seeing erosion, the
Association Board decided to put the money held at UF to work in advancing Dr. Notterpek’s
research with a more specific focus on facial pain. The Board of the Association has seen
the importance of facial pain research almost since inception. In 2010, an opportunity arose
to give the research efforts new impetus. A group of former Association Board members came
together with a desire to focus exclusively on seeking a cure for facial pain. So, to take
advantage of their enthusiasm and commitment, we changed the name of FPRI to the
Facial Pain Research Foundation and gave the Foundation a mandate to find a cure, to be
overseen by a board of trustees separate from the Association’s board. The names of
these volunteer trustees are well known to you by now: Michael Pasternak and Mike Hirsch,
both former Presidents of the association, Doug Anderson, now retired from UF, also a
former Association Board Member, Suzanne Grennel, a former Association Board member,
and Al Rhoton, a former Medical Advisory Board Member.
They were joined by Jay Winer, a volunteer who many of you will know from his days behind
the camera at Association National Conferences and by me, as the Association Board Chairman.
With the money raised by the Foundation since 2010, the aggregate amount dedicated to
research by the Association and the Foundation is over a half million dollars. Every Foundation
dollar received for research goes for that purpose. This is because the Foundation relies
on an army of volunteers who devote selfless time to raising money and reaching out
to the research community to discover new opportunities for collaboration. Our business model
is to provide seed capital for research institutions to develop new discoveries that can be
translated into treatments that lead to a cure. The institutions then raise grants from NIH and
other sources to pursue their discoveries, with the Foundation providing supplements as
appropriate. During the next twelve months our goal is to raise $1,000,000.
This is a sound plan but it needs philanthropic support. The axiom in philanthropy
is that one can give of one’s time, one’s talent and one’s treasure. The Foundation can use
a bit of yours in ample measure. You will not be sorry. Facial pain patients have little
to smile about, particularly if you have unresolved pain following surgical or other treatments.
Even those of us who are free of pain are not assured that it won’t return. Helping our
research endeavor may be a way to change how you think of facial pain.
It may help to put a smile on the face of facial pain.