On April 10, 2015, TLC hosted the first BFRB Precision Medicine (BPM) Forum, providing participants an opportunity to hear directly from our researchers about the progress and vision of the BPM Initiative. A brief summary from each presenter follows.

The BPM Initiative is fundamentally different from any previous hair pulling or skin picking research efforts.

I see the BPM Initiative as a groundbreaking opportunity to address our biggest challenge—that today’s hair pulling and skin picking treatments are only moderately successful and rarely lead to permanent remission. The BPM Initiative aims to increase remission rates from the current 10%-20% to as high as 70% within five to seven years.

Two things set the BPM Initiative apart as historic—national collaboration among scientists and the application of precision medicine to BFRBs.

The collaboration around the BPM Initiative is unprecedented—we have brought together the leading researchers from across the country in the fields of hair pulling and skin picking. This collaborative approach is unlike anything currently taking place in mental health research, so TLC is at the leading edge of both BFRB research and the broader field of mental health research.

Precision medicine will enable this initiative to identify very targeted treatments in a relatively short period of time. We will be compiling the most comprehensive set of BFRB data in history, including biology, brain scans, and genetic data, in order to form composite profiles that address the nuances of hair pulling and skin picking behaviors. These profiles will help us determine how and why certain treatments work for some people but not for others, and ultimately lead us to new treatments. Continued on page 6

touchina publication of the trichotillomania learning center

BFRB Precision Medicine Forum: Updates and Next StepsA report from the BPM Initiative Development Committee

volume 5 | issue 77 research edition | summer 2015

Understanding the BPM Initiative’s Vision and Structure Dr. Jon Grant (University of Chicago)

Members of TLC and TLC Scientific Advisory and Executive Board members listen intently to Dr. Jon Grant (not pictured) outline the structure of the BFRB Precision Medicine Initiative.

Inside this Issue:The CliffsNotes on Precision MedicineMighty Mice Lead the WayNational Treasure in Current BFRB Data

Starting Small to End BigFunding the BPMResearch News from American University

TLC Millennial Task ForceNew StaffFall Events ...and more!

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TLC Board of DirectorsJoanna Heitz, PresidentDeborah M. Kleinman, TreasurerBrenda Cameron, SecretaryJon E. Grant, JD, MD, MPH, Scientific Advisory Board ChairChaille Percival DeFariaMarla Deibler, PsyDDana Marie FloresBrian HaslamDouglas RobsonRahel SmithSusannah West

StaffJennifer Raikes, Executive DirectorKelly Ernst, Program AssistantDana Hickerson, Office ManagerAlice M. Kelly, Membership Services/Accounting ManagerLeslie Lee, Program Manager/EditorCorinne Lightweaver, Annual Fund DirectorBetsy Wootten, Administrative Support

Sophia Alapati, InternKatherine Paris, Intern

Christina S. Pearson, Founder

TLC is a 501(c)(3) tax-exempt organization and all contribu-tions are tax-deductible. Our tax ID number is: 77-0266587.

InTouch is a quarterly publication of the Trichotillomania Learning Center, Inc.To submit articles or send letters write to:Trichotillomania Learning Center207 McPherson Street, Suite H, Santa Cruz, California 95060(831) 457-1004 . www.trich.org. info@trich.org Editor: Leslie Lee

Copyright © June 2015. All Rights Reserved.Text deadline next issue: July 15, 2015

The information in this newsletter is not intended to provide treatment for hair pulling or skin picking disorders. Appropriate treatment and advice should be obtained directly from a qualified and experienced doctor and/or mental health professional. The opinions expressed are those of the individual authors.

The Trichotillomania Learning Center’s mission is to end the suffering caused by hair pulling disorder, skin picking disorder, and related body-focused repetitive behaviors. Donations from members and friends are TLC's largest source of support, and they are the sole reason TLC can provide help and healing to people with hair pulling and skin picking. It is people like you, giving what they are able, who make our work possible. All donations are tax deductible — please consider making a donation today!

Visit www.trich.org for details!June 16

Webinar - Research Update on Skin Picking Disorderwith Brian L. Odlaug, MPH11:00am PT / 12:00pm MT / 1:00pm CT / 2:00pm ET

June 20

One Day Workshop - London, United KingdomKings College, Strand Campuswith Dr. Jon Grant and Dr. Suzanne Mouton-OdumHosted by TLC Executive Director, Jennifer Raikes With special guests Rebecca Brown, Judith Stevenson and Pavitt Thatcher9:00am - 5:00pm

August 22

One-Day Workshop - Boston, MAwith Nancy Keuthen, PhDProgram details coming soon!

Sept. 26

One-Day Workshop - Tampa, FLSponsored by Rogers Behavioral HealthMore information coming soon

Oct. 16-18

Professional Training Institute - Jersey City, New JerseyA CBT-based training program for licensed clinicians.19 CEs and follow-up supervision is included!

Coming Soon

Webinar:How to Start and Lead a BFRB Peer Support GroupA multi-part webinar series led by Sarah Robertson, Canadian BFRB Support Network

One Day Workshop - Cleveland, Ohio

2016 Annual Conference - Dallas TexasApril 15 -17, Dallas-Addison Marriott Quorum

Upcoming Events

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AnnouncementsMeet the Millennial Task ForceTLC has many hard workers both in the forefront and behind the scenes. One hardworking team emerging from the background is the Millennial Task Force. The Task Force is composed of eight young women who have an unbelievable passion for TLC. Their mission is to raise awareness and provide outreach for BFRBs amongst teens and young adults. Currently, the Millennial Task Force is working hard on two main projects –– an advice column and school and college outreach.

With the Tumblr advice column, the Task Force has created a social media-based help forum for people with BFRBs. The women receive and answer questions from anonymous users asking for guidance on everything and anything BFRB. The advice column has grown into a social hub with over 350 followers in just a short amount of time. Check out the advice column at trichs-n-picks.tumblr.com.

Through school and college outreach, the Millennial Task Force hopes to help educate others and reduce the stigma surrounding BFRBs on campuses across the country. Over the summer, the Task Force will design a high school and college outreach program, with the goal of empowering young adults to raise awareness and promote recovery in their communities.

Inaugural TLC Millennial Task Force members, left to right: Katie Koppel, Claire Cameron, Katherine Paris, Elizabeth VanTuinen, Maddie Lapp, Sophia Alapati, Mackensie Freeman, and Nicole Santamorena.

New TLC Staff MembersCorinne Lightweaver, Annual Fund DirectorCorinne Lightweaver is TLC’s new Annual Fund Director and is thrilled to be working with the dedicated staff and amazing community of TLC. She has been in remission from OCD for a number of years and has people dear to her who are dealing with the challenges of skin picking, hair pulling, and other body-focused repetitive

behaviors. Corinne has a BA in English from UCLA with a specialization in Women’s Studies and an MA in Nonprofit Management from Antioch University Los Angeles. She is a member of the Association of Fundraising Professionals and earned a designation as a Certified Nonprofit Professional (CNP) from the Nonprofit Leadership Alliance.

Kelly Ernst, Program AssistantKelly is not exactly new, in fact it was almost two years ago that we first introduced her to you! She was hired as Program Assistant in 2013 - and not long after, her dream of joining the Peace Corps was realized - she left her new TLC family to pursue teaching English in Liberia. Soon after,

Kelly, along with her Corps colleagues, were evacuated, and it just so happened that we were still looking for the right person to replace her! In fact, Kelly fits so perfectly that she has become a full-time employee at TLC - and we couldn't be happier to have her on the team!

Sophia Alapati, TLC InternSophia is 21 years old and a Clinical Psychology MA student. She has had trichotillomania since she was nine. Sophia is also a member of the Millennial Task Force. In addition, she has presented sessions at the TLC Conference and conducted BFRB research while working on her

degree. Sophia's goal is to become a psychologist specializing in the treatment of BFRBs. The TLC internship will provide her more experience working with people who have BFRBs and educating support people and others about the disorders.

Katherine Paris, TLC InternKatherine is a 19-year-old college student from Long Island, NY. Katherine has volunteered at TLC events since her first conference in 2012. She has shared her inspirational story of remission and recovery from trich with the TLC Community through the newsletter, letters to

members, and the TLC blog. Katherine will intern with TLC for one year. Her duties will focus on facilitating the Millennial Task Force meetings and working with staff and the Task Force to develop a permanent school and student outreach program.

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The Clinical Psychology Research Lab at American University, directed by David Haaga, has recently completed several projects about trichotillomania (TTM), including a treatment development study of the Comprehensive Behavioral Model (ComB) and a study about the social and economic impact of TTM. The ComB treatment development study, directed by David Haaga and Charles Mansueto (Behavior Therapy Center of Greater Washington), was completed in January 2015. This study aimed to concretize and pilot test ComB for TTM, with the ultimate goal of rigorous testing of the efficacy of the model. ComB was developed to provide therapeutic strategies for managing the distinct factors that maintain individuals’ hair pulling (Mansueto, 1990).

Sixteen patients were treated with the ComB manual, which was written by Charles Mansueto, Ruth Golomb, and Suzanne Mouton-Odum and revised according to feedback from both study patients and therapists. Attendance and treatment satisfaction were both high, suggesting that the treatment was highly acceptable to patients. ComB study therapists were found to reliably select interventions from the manual more than therapists who had not been trained in the manual, which is important for ensuring consistency with the ComB model that can generalize across therapists. Additionally, a measure of therapist adherence was developed and pilot tested, which had good reliability results.

Results showed that TTM symptom severity and related impairment improved at post-treatment and began to slightly decline at three-month follow-up. Unfortunately, decline at follow-up has been a trend in TTM treatment studies (Falkenstein et al., 2014). Quality of life also improved at post-treatment, and continued to stay improved at follow-up. Improvements in self-reported TTM symptoms had large correlations with improvements in quality of life, disability, and depressive symptoms. Overall, the ComB treatment study has resulted in the development of a manual and measures to be used in a future randomized controlled trial of the ComB treatment model for TTM. Preliminary results about the efficacy of ComB treatment are promising. The ComB approach to treatment is important to investigate further because it allows clinicians to expand the scope of current cognitive-behavioral treatment for TTM by maximizing the amount of tailoring therapists can do for each hair puller’s unique presentation.

David Haaga's lab at American University has also been investigating the social and economic impact of TTM. Results further demonstrate that individuals with TTM spend a great deal of time on hair pulling behaviors and experience social avoidance, interpersonal difficulties, occupational difficulties, and economic strain. More specifically, those struggling with hair pulling may spend three hours per day on hair pulling behaviors and hundreds of dollars on products to conceal the effects of hair pulling and/or treatment to reduce hair pulling.

Additionally, data suggested that economic costs significantly correlate with symptom severity; however, social costs, time costs and work-school costs did not correlate with TTM symptom severity. In other words, an individual with more severe TTM symptoms will likely spend more money on products and treatment for TTM, compared to an individual with less severe symptoms. Conversely, more severe symptomatology was not associated with more difficulties at work, relationship distress and/or time. Thus, treatment for TTM may help a patient reduce their symptoms, but their social life may not improve with treatment. Accordingly, it is important to consider interpersonal and daily functioning, in addition to symptom reduction, with respect to treatment outcomes. Falkenstein, M. J., Rogers, K., Malloy, E. J., & Haaga, D. A. F. (2014). Predictors of relapse following treatment of trichotillomania. Journal of Obsessive-Compulsive and Related Disorders, 3, 345-353.

Mansueto, C. S. (1990, November). Typography and phenomenology of trichotillomania. Paper presented at meeting of the Association for the Advancement of Behavior Therapy, San Francisco, CA.

Research Update from American UniversitySumbitted by the Team at the Clinical Psychology Research Lab at American University

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2015The Christina Pearson Award

Presented ToDavid Pauls, Ph.D.

For his tireless dedication and commitment to benefit the TLC Community

For being willing, in 1992, while engaged at Yale University in genetics research of several inherited family disorders,

to join TLC's fledgling Scientific Advisory Board (SAB) and for serving it profoundly over the next 23 years;

For his humor, insight, and gentle wisdom in guiding much of the development of the SAB's research programs,

thus helping TLC’s SAB to become recognized as one of the most collaborative Scientific Advisory Boards in the USA;

For being the conceptual originator of, and Co-Investigator for, TLC’s Genetics Project, now included in the NIMH Genetics

Repository in Washington, DC, enabling access to well-defined genetic samples and cell lines by researchers around the world;

For insisting that Body-Focused Repetitive Behaviors be included among the disorders studied at the Psychiatric and

Neurodevelopmental Genetics Unit at Massachusetts General Hospital that he founded at Harvard Medical School in 2001;

For being Principal Investigator of the most complex, in-depth Family Personality and Genetics Study ever done in this field, from which important, ground-breaking data is yet

emerging that will benefit this and future generations;

For teaching and inspiring researchers, clinicians, and others to pay attention to the true impact of BFRBs around the world;

For believing in the value of supporting TLC’s work through active scientific participation;

For being an invaluable mentor for Christina, TLC’s Founder, in all matters of research; and perhaps most of all,

For being a true friend not only to her, but to the greater BFRB community as well.

For this, we want to thank Dave for his profound and caring role as a TLC Volunteer.

By the Trichotillomania Learning Center's Board of Directors

2015 Christina Pearson Award

The Christina Pearson Award was created by the Board of Directors in 2000 to celebrate the first ten years of dedicated service to our community by TLC's founder, Christina Pearson. It is awarded annually to a volunteer who has made extraordinary, long-term contributions of time and talent to this organization and our mission.

David L. Pauls, giving an BFRB research update at the 2012 TLC Conference. David is truly a special mentor and friend to Christina, and you can tell from the bottom image how much she truly values his work in this field!

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Precision medicine is the key to identifying new treatments that will dramatically change BFRB remission rates.

Precision medicine uses biological and genetic traits to describe an individual pattern of disease. We’ve seen this approach produce revolutionary results for cancer, and the National Institute of Mental Health is leading the way in applying this approach to mental health disorders. As a scientist, I can say that the BPM Initiative is truly forging a new path by applying these cutting-edge research strategies to the discovery of new treatments for hair pulling and skin picking.

Current treatments often focus on all hair pullers and skin pickers as a single group, without distinguishing different pulling and picking behaviors. But the consensus among TLC’s Scientific Advisory Board is that there may be six to ten different subtypes of pullers and pickers. Hypothetical examples of these might include behavior patterns like reward seekers and impulsive, anxiety-driven, and habitual pullers and pickers.

The BPM Initiative will enable us to identify and refine these different subtypes (phenotypes) and target therapies to each one based on brain imaging, blood analysis, and behavioral testing. Generally speaking, the simpler a phenotype is, the more likely we are to find successful treatments using precision medicine. I don’t consider trich excessively complicated as a disorder, so I’m confident that this initiative will bring new and more effective treatments for hair pulling and skin picking.

The BPM Initiative’s animal studies will help to accelerate the pace of research discoveries by identifying the most promising hypotheses to test in studies with human patients.

I’ve worked with mice who pull their own hair, or “barber,” since 2001, and more recently with mice that scratch and chew at their skin. In general, research on animal models enables us to ask questions we couldn’t—and wouldn’t—in humans. In particular, because mice age quickly, going from conception to old age in one year, we can discover and manipulate life-

For more information or to make a donation towards the BPM Initiative, please contact TLC Executive Director Jennifer Raikes at jennifer@trich.org or 831-457-1004.

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BFRB Precision Medicine Forum continued from page 1

Understanding Precision Medicine for Mental Health Dr. Darin Dougherty (Harvard University and Massachusetts General Hospital)

Role of Animal Studies in Guiding BPM Research Dr. Joe Garner (Stanford University)

long developmental processes that generate the patterns we see in human physiology. Ultimately, studying mice can lead to faster and cheaper proof-of-concept drug trials.

We can take both a forward- and a reverse-translation approach in animal models. A forward approach means that discoveries with mice can guide human work, enabling us to narrow what to look for, apply precision medicine, and discover effective drugs. A reverse-translation approach uses human study results to inform mouse studies. The mouse models of hair pulling and skin picking were developed from the ground up to ask the same questions as BPM (such as looking for screening biomarkers and preventative treatments). Today, the animal models have validated genes and biomarkers to test in humans as part of our precision medicine approach to hair pulling. In skin picking, we have discovered that glutathione seems to be an effective new drug and needs to be examined further.

Analysis of existing behavioral data on 800 subjects will lead us to a powerful early understanding of BFRB profiles.

Because the BPM Initiative is built on collaboration, we already have access to data from 800 subjects across five sites. I can’t emphasize enough how valuable this will be as a foundation for all future BFRB research efforts. By combining existing data sets, we will boost the sample size and demographic diversity of our data, and establish key early hypotheses about BFRB profiles. It will also generate huge benefits for predictive modeling, for teasing out other factors (co-morbidity), and for understanding the influence of age, gender, and ethnicity on these disorders.

In addition, DNA from 400 individuals has already been transferred to the National Institute of Mental Health (NIMH), which is holding this data. It can be used for genotyping to help understand the genetic factors involved with BFRBs. NIMH’s assistance brings a huge cost savings and boosts the profile of the BPM Initiative.

This early data analysis phase of the BPM Initiative will have a high scientific yield for minimal dollars and produce the largest data set ever compiled on hair pulling and skin picking disorders.

Why The BPM Initiative’s first pilot study will be a critical step in testing data collection standards before taking the research to a larger scale.

We are embarking on a multi-site coordinated research effort, which brings inherent challenges for comparing data from different locations. In February of this year, several BPM scientists met in Salt Lake City to finalize our research protocols. These are the data collection standards that will allow us to compare data across sites. Our next step will be to test and refine those protocols with a pilot study involving thirty subjects across three sites, to be conducted in Fall 2015. Throughout this pilot study, we will make any necessary adjustments to the research protocols with this limited number of subjects. Once we’ve tested our research protocols, we will be ready to launch the full BPM Initiative with additional patients across a greater number of research sites.

An overview of our BPM fundraising success to date, and what philanthropic support is needed for the next phase of this groundbreaking research work.

Over the past year, I have been blown away by a truly visionary group of donors who have already contributed more than $600,000 to help launch the BPM Initiative. In addition to these financial supporters, our many scientists and volunteers have already donated hundreds of hours just to get us through the planning phase of the BPM Initiative. Our next focus is to raise an additional $400,000 to fully fund our pilot study of thirty new patients, which will be a crucial first test of our research protocols. We will need these funds in hand by Summer 2015 in order for the pilot study to proceed as scheduled in Fall 2015.

Please consider investing in this next pilot study phase of our research. And please think about friends and colleagues in your network who might want to help advance this work, including foundations and corporate sponsors. As a community, I know that we can raise the resources we need for the BPM Initiative to succeed.

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First Step in the BPM Research Plan—Analyzing The Data We Have Dr. Nancy Keuthen (Harvard University and Massachusetts General Hospital) and Drs. Jeremiah Scharf (Harvard University) and Chris Flessner (Kent State University) [not pictured]

Launching Our First BPM Pilot Study Dr. John Piacentini (UCLA)

BPM Funding Update TLC Executive Director Jennifer Raikes

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Online Research SurveysSleep and Hair Pulling Adult Internet SurveyResearchers at University of California, Los Angeles, are conducting research assessing sleep in individuals with hair pulling symptoms. We are recruiting adults ages 18 and older who engage in repetitive hair pulling. The survey will take approximately 30 minutes. Please visit the following link to participate: https://www.surveymonkey.com/s/sleephairpullingadults

Sleep and Skin Picking Adult Internet SurveyResearchers at University of California, Los Angeles are conducting research assessing sleep in individuals with skin picking symptoms. We are recruiting adults ages 18 and older who engage in repetitive skin picking. The survey will take approximately 30 minutes. Please visit the following link to participate: https://www.surveymonkey.com/s/sleepskinpickingadults

Online Survey Exploring Motivations Underlying Hair PullingSwinburne University of Technology is conducting research on what motivates individuals to pull their hair. It is hoped that a deeper understanding of motivation will assist in the development of more effective treatments. Individuals over 18, with and without trichotillomania, are invited to participate. Participation is completely anonymous; you cannot be identified in any way. The questionnaire takes between 30 to 45 minutes. Please visit the following link to participate: http://opinio.online.swin.edu.au/s?s=16215

Hair-Pulling Urges and Everyday UrgesWe are interested in better understanding the nature of hair-pulling urges, and how these urges compare to other, everyday urges. If you experience hair-pulling urges, we invite you to participate in an online survey. You do not need to have been formally diagnosed with trichotillomania in order to participate.

The survey should take you about 30-35 minutes to complete, and your responses will be anonymous.

You can access the survey at the following link: https://umichumhs.qualtrics.com/SE/?SID=SV_cvbs88Jxr8akKxL

Regional Research StudiesLos Angeles, CAResearch Opportunity For Kids and Teens With TTMUCLA Neuropsychiatric InstituteConducted by Tara Peris, PhDStudying Non-Drug Behavioral Therapy (BT) and the Brain in Trichotillomania (TTM)Do you have or think you might have TTM? Do you have frequent urges to pull you hair?Do you have noticeable hair loss?Do you have mounting tension before pulling your hair?Do you have a feeling of relief or gratification after pulling?If you’re a boy or girl ages 7-17 and one or more of the above apply, you may be eligible for our studyFor more information, please contact: Olivia Johnson at (310) 825-2064

Chicago, ILHair Pulling Disorder Medication StudyUniversity of Chicago, Department of PsychiatryCurrently seeking volunteers for a 10–week research study using an natural supplement for the treatment of hair pulling.

Skin Picking Disorder Medication StudyCurrently seeking volunteers for a 12–week drug study using a natural supplement for skin picking.

Participation in either study requires several visits to our Chicago study center. As a result, those interested in participating must live within the Chicago metro area and must be at least 18 years of age. Dr. Jon Grant is directing this study at the University of Chicago. If interested in either of these studies, please contact Sarah Redden for more information: 773-702-9066 or sredden@uchicago.edu

Boston, MADo you pull out your hair?Dr. Nancy Keuthen is conducting a genetics research study of compulsive hair pulling at Massachusetts General Hospital. You may be eligible if you are 18–65 years of age and frequently pull out your hair.

If eligible for this research study, you will come to MGH for one study visit that will include an interview, several self-report scales, and a blood draw. Study participation will take 3–6 hours of your time. You will be paid $50 for participating. If interested, please call MGH Trichotillomania Clinic at 617-643-8464 or email: ewu9@partners.org.

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Regional Research Studies (cont.)Syracuse/Central New YorkTrichotillomania and OCD: Profiles of Cognitive Deficits in TrichotillomaniaWe are currently testing impulsivity and decision-making skills in trichotillomania and obsessive-compulsive disorder. Trichotillomania (TTM) has recently undergone a change in classification, from an impulse-control disorder to an obsessive-compulsive spectrum disorder. Impulsivity, or acting without thinking, is a feature common in impulse-control disorders, and studies of OCD have seen impairments in decision-making. The purpose of this study is to assess these skills in people with TTM and OCD in order to see which category of classification is more appropriate for TTM. Finding the most fitting classification for TTM would lead to better understanding of the disorder, including better approaches to treatment.

Eligibility requirements: Age 18+, living in Syracuse/Central NY area, have a formal diagnosis or a self-perceived presence of OCD or TTM, and not currently taking any medications for OCD or TTM. This research is conducted in Syracuse, NY, at the CNY Medical Center (739 Irving Ave.).

The entire study should take no longer than 90 minutes to complete. Each participant will be compensated $0.50 for every five minutes of participation, up to $10 for completing the experiment in its entirety and up to $5 for completing the first component only. Even if the whole study is completed in less than 90 minutes, you will still be compensated the full $10, and you are free to withdraw from the study at any time without penalty. If you are interested, please contact Kimi Skokin, Syracuse University, at SUtrichstudy@gmail.com to coordinate a day and time to come in and participate.

Kent, OHChildren with Hair Pulling Disorder (Trichotillomania) Needed for Family Assessment StudyDoes your child pull out his/her hair? Does this pulling cause a problem at school, with friends, or at home? The Child Anxiety Research (CARe) Program is looking for youths, age 9–17, who pull out their hair and one of their parents to participate in a research study. Those eligible receive a full assessment of symptoms, compensation, and written feedback, including potential diagnoses and treatment options and referrals. Children can EARN UP TO $75 IN GIFT CARDS for participation.

If you and your child might be interested in this research study, you can contact us at 330-672-2200 or visit our website: www.ChildAnxietyResearchProgram.com

Philadelphia, PADoes your child suffer from trichotillomania? Martin Franklin, PhD, is examining treatments for children at The Center for the Treatment and Study of Anxiety in Philadelphia. Participants will receive either Behavior Therapy or Supportive Counseling. Children and adolescents, ages 10 through 17, who repetitively pull their hair may be eligible to participate in this study. Must live in the greater Philadelphia area to particpate.

For more information on this program, contact:Kristin BenavidesCOTTAGe (Child/Adolescent OCD, Tics, Trichotillomania and Anxiety Group)Phone: 215-746-3327Email: kben@mail.med.upenn.edu

Milwaukee, WisconsinStudy: Developing Effective Response Inhibition Training for Symptom Relief in OCDWe are currently testing computer-based treatment programs designed to help adults (aged 18–60) suffering from problematic repetitive behaviors, including

- Obsessive-compulsive disorder (OCD)- Compulsive hair pulling (Trichotillomania)

This research is conducted at the Psychology Training Clinic, the University of Wisconsin-Milwaukee (sponsored by the NIMH). All study procedures will be completed in our clinic, located within the University of Wisconsin-Milwaukee campus. Participants will be randomly assigned to one of the two similar computer-based training conditions designed to help improve symptoms for individuals with OCD or trichotillomania. If you are interested in our study, please contact us at (414) 416-4249, or adl@uwm.edu for more details about the study.

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Letter from the Executive DirectorJennifer RaikesLos Angeles, CAJennifer@trich.org

Dear Friends,

A few weeks ago, I found myself at a FedEx copy center at 1 am

with Charley Mansueto. For those of you who don’t know, Charley is a pioneering BFRB clinician who has served on our Scientific Advisory Board since TLC was founded.

It was the first night of TLC’s Professional Training Institute, and there had been a small miscommunication. Late that evening, we realized we didn’t have the printed handouts needed for the following morning. We could have let it go and provided the handouts later. But that would have been suboptimal for our students—28 wonderful clinicians who cared enough about treating BFRB patients to attend this weekend-long training. The first copy center we found was closing, but they waved us on to a town farther south with an all-night office. I know Charley’s commitment to our cause, and if I hadn’t helped him on this odyssey he would have been alone at the hotel, printing out these copies one by one until 4 am – determined to put on the best possible training! So there we were at the Manhattan Beach, CA, all-night FedEx office in the wee hours of the morning. This was not our first such adventure. I had to smile.

You can read this story as one of disorganization – and it is certainly evidence of how much TLC does without quite enough staff – but what makes it precious to me is the heart Charley puts into his work for our community, even after twenty-five years. I share it with you because I want you to know that the love and dedication you give to TLC as members and donors is truly reciprocated by Charley and the many amazing people carrying out our mission.

TLC is growing with your support. Thank you! I couldn’t be more excited or grateful. We are thrilled to have Kelly on board full-time in Santa Cruz and Corinne helping me right here in Los Angeles. We’re also in the midst of hiring a director to guide our momentous BFRB Precision Medicine Initiative (BPM).

TLC’s Millennial Task Force has been channeling the energy of youth in remarkable directions: a busy Q&A on Tumblr, a budding Campus Outreach program, an Awareness Week campaign, and two new TLC interns to help make it all happen: Katherine Paris and Sophia Alapati. Many thanks to Paula Koppel for the organization and wisdom she brings to these efforts.

Our network of support groups is growing, too. TLC Board members Brenda Cameron and Susannah West have organized monthly calls to help support the support group process – and we’re grateful to all the current and future group leaders who volunteer their time to participate.

This growth is necessary.

When I sit at my desk, I glance up at columns of Post-It Notes on the wall, all color-coded to the three big areas of TLC’s mission – Community & Education, Treatment Access & Training, Research – and additional columns for Administration and Fundraising, too. All are essential elements to making TLC tick. (There’s an extra column, too, off to the side, with all the things my kids and home need… but I won’t bore you with that. You’ve got your own lists!) It is a vibrant display of the wide range of programs needed to fulfill our mission to end suffering caused by BFRB.

But lists can also be a bit abstract. It is when the phone rings, or an email pings, that the flesh and blood nature of our work is clear. “The pediatrician told me to just ignore her pulling.” “I hear a tablespoon of vinegar is the cure.” “What can I do? There are no treatment providers near me.” “She’s been picking for years. We’ve tried everything.” “We wound up at the ER because she’d given up hope of ever stopping and started talking about suicide.” TLC has answered more than 1,300 such rings and pings in the last four months. The need to increase our capacity is urgent, actually. Imperative.

I thank you for being among those who support this organization and our mission.

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We are in the middle of this action-packed year now, with workshops, webinars, clinician training, BFRB Awareness Week, and an overhaul of our website all to come in the months ahead. Not least of all, the first stage of the BFRB Precision Medicine Initiative. The BPM is the path to what we want most: effective treatments for all of us.

To fundamentally change the experience of having BFRBs will require a deep commitment – and strong financial investment – from the members of this community. If you or your loved ones have the capacity to make a significant leadership gift to BPM, please contact me. I would love to make a match between our goals for treatments and yours.

Growth requires growth of support. So I’m asking you today to think about making a donation to TLC that is meaningful to you – one that reflects the impact of TLC in your life and your hopes for the TLC community so that we can continue our fight together. Give now, and the Board of Directors will match your donation - up yo a total of $25,000.

Because together we are strong.

With love,Jennifer

Together, we are building the resources our community urgently needs.

Did you know that your donations support a targeted awareness campaign every fall? This year, one skin picker’s gift of $650.00 enabled us to boost our awareness campaign with Facebook ads – together we reached 150,000 new skin pickers with information about how to find help. Your generous gift to TLC has big impact!

Did you know that more than 90,000 people visited www.trich.org last month? TLC’s website is the place to share our stories, find a support group or therapist, join an online discussion, find local events – or a friendly hair salon – even ask questions of BFRB experts in monthly webinars. Your gift of $100 ends isolation.

Did you know clinicians graduating from the TLC Professional Training Institute report higher abstinence rates for their BFRB patients? Clinicians also report seeing more BFRB patients and training their colleagues in BFRB treatment. Your gift of $1,000 educates a treatment provider – bringing the best current treatments close to home.

Did you know that TLC’s Scientific Advisory Board all stand behind the BFRB Precision Medicine Initiative? These dedicated doctors have been responsible for the proven treatment advances that help us today – Comprehensive Behavioral Therapy (COMB), Habit Reversal Training, Acceptance and Commitment Therapy, Dialectical Behavior Therapy, N-Acetylcysteine– and they have united to develop the BPM Initiative. Your gift of $10,000 will help launch BFRB research on an unprecedented scale.

Visionaries Circle $25,000 $10,000 $5,000 $1,000 $500 $_______________ $_________/month

I want to learn more about the BPM Initiative — please contact me. I would like to make a gift of stock to TLC. Please contact me. I am including TLC in my estate plans.

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Cardholder Name ___________________________________________________Signature_____________________________________________________________Thank you for your support. TLC is a 501(c)(3) tax-exempt organization and all contributions are tax-deductible. Our tax ID number is 77-0266587.TLC • 207 McPherson Street, Suite H • Santa Cruz, CA 95060 • Fax: 831-427-5541Phone: 831-457-1004 • www.trich.org • info@trich.org

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