MY ACCOMPLISHMENTS IN THE FIELD OF BFRB PUBLIC AWARENESS & SCIENTIFIC RESEARCH
Founded the TLC Foundation for BFRBs in 1991. https:\\www.bfrb.org
My background is grounded in Body Focused Repetitive Behaviors (BFRB’s), which I personally struggled with for over 25 years (I both pulled hair and picked skin, swimming in devatating shame from the age of 12 until 34 years old, when I discovered others did what I did).
In 1990, I single-handedly founded the world’s first organization for BFRBs in order to give a voice to this uncharted arena of human suffering, bringing together world-renowned scientists, researchers, and clinicians to study and develop treatment as members of TLC’s Scientific Advisory Board. We were granted nonprofit status in 1991. (see the TLC Foundation for BFRBs)
Over the next two decades, I was asked for countless interviews, ranging from daily newscast productions to monthly glamour magazines. I was asked to be a guest on multiple talk television shows across the country, and was invited to regularly present on BFRBs at various colleges and mental health clinics.
One of my first goals was to form a well-respected Scientific Advisory Board (SAB) for the organization.To accomplish this, I sought out and brought together many of the leading clinical, medical, and research-oriented investigators from around the world with an interest in BFRBs. This group went on to develop guidelines for TLC funding scientific research, Best Practices for treatment modalities, and implemented scientific exploration of the underlying biology of BFRBs.
I have advocated at a national level for BFRBs, through working in alliance with the National Institute of Mental Health (NIMH) and other National Organizations (NORD, ADAA, APA, IOCDF, TSA, AAD, AAP). Through my work with the NIMH, initiated some of the first serious funding for BFRB Research.
During my time at the Helm of the TLC organization, I established the quarterly newsletter In Touch, created an Annual TLC Conference, an Annual TLC Retreat (both attended by participants from around the world), outlined and presented numerous workshops for both clinicians and sufferers across the country, worked collaboratively to create an educational program for cosmetologists, inspired and supported the TLC SAB to collaboratively write, and publish, useful Consensus Treatment Guidelines for BFRBs, and much more, all as part of the overarching outreach program I developed to serve the BFRB community. I also facilitated a free weekly recovery support group at the TLC office for 21 years.
To support scientific research of BFRBs, early on I had established TLC’s Research Fund, subsequently raising money for various seed-research projects. It provided funding for the TLC Scientific Advisory Board’s amazing seminal research published in 2006 in leading academic journals proving the significance of the public health impact of BFRBs, and why they deserve rigorous scientific research. That alone was remarkable.
In 2007, I collaborated with Nobel Prize laureate Dr. Mario Capecchi, who was researching compulsive behavioral disirders, by arranging for his team to collect bone marrow samples from trichotillomania sufferers (hair pullers) attending the TLC confeence. His research group at the University of Utah went on to discover through preliminary research that a bone marrow transplant reversed a behavioral grooming disorder in mice similar to trichtillomania in humans. This work established a possible link between mutant immune cells and psychiatric disorders.
I was participatory in the DSM-5 committees’ updating and revising of the DSM-4 manual, renaming certain disorders and creating new classifications, along with updating the criteria for trichtillomania (hair pulling). This work resulted in TLC helping to get skin picking disorder entered into the newly updated and revised DSM-5 manual,
In 2013, I was responsible for the NIMH’s comprehensive neuropsychiatric genomics program agreeing to accept, and store, at the National Center for Genetic Studies, BFRB genetic samples that TLC had collected in order to increase world-wide availability for scientific researchers.
Over the past 3 decades, I have worked closely with several thousand individuals and families seeking to develop greater self awareness, learn effective living skills, improve interpersonal communication, and establish healthier interpersonal boaundaries, all in the service of reducing unwanted BFRBs.
Developing these skills effectively enhances our relationship with self, and our relationships with others. The sad truth is these skills tend to be at deficit levels in our current culture, yet all healthy relationships inherently depend upon them!
The main focus of my work is in raising self-awareness through mindfulness training, and teaching practical BFRB living skills that enable a more fulfilling navigation of life on a daily basis.
Perhaps, what is actually most relevant, is that I now have almost 30 years of strong BFRB recovery, and the daily tools to stay on track.
(There is so much more, but maybe it will come out if I ever write a book!)