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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.


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