"I turn 22 soon and I have decided to raise money for the organization that literally saved my life 10 years ago.” -Daisy in VirginiaFriends and supporters of TLC, thank you. Your donations and active participation in this community are what helped Daisy.

I often end our calls to action by stating, “If we don’t do it, no one will.” This is not hyperbole. Without the efforts of those of us affected by BFRBs, nothing happens. There are no outside entities charged with advancing this field. There are no other institutions focused on BFRB research or treatment development. If we don’t teach, no one learns. If we don’t speak up, there is silence.

So let’s take a moment to look back at the important work we’ve done this year – and what’s on the horizon for 2018.

ResearchThe driving force behind the BFRB Precision Medicine Initiative (BPM) was the realization that if we don’t find – and fund – answers ourselves, no one else will. There is not a single federally-supported research study being conducted right now for BFRBs. Yet, this year we completed an ambitious three-year effort to raise the funds needed to support the BFRB Precision Medicine Initiative (BPM). With your help, we raised $2.8 million for BFRB research. Together, we are doing it.

Thanks to you, there is now pioneering work underway at three of the world’s most renowned medical institutions. Our BPM teams at the University of Chicago, UCLA, and

InTouchissue 87 | winter 2017

continued, page 6

What's Inside:

Upcoming Eventspage 2

Members Making a Difference

page 3

#SeeMeStand Recappage 4

Join the TLC Task Force page 5

Holiday Survival Guidepage 5

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For Members on bfrb.org:

New Webinars in the Community Center bfrb.org/login

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store.bfrb.org20% Discount

use code

THANKU

a publication of

Impact Report Let's take a look at all you've accomplished!

Our BPM teams have already seen more than 100 (out of 300+) research participants, making this the largest

neuro-imaging study ever conducted of BFRBs.

2 InTouch www.bfrb.org

Upcoming EventsGet tickets and details for these events and

more at bfrb.org/events

One Day Workshop: DetroitMarch 3, 2018TLC is heading to Detroit to celebrate the 25th Anniversary of THEO (Trichsters Helping Each Other), a local peer support group run by Roberta "Bobbie" Slade, recipient of the Christina Pearson Award for her service to the BFRB community. The workshop program is designed for adults with BFRBs. Learn more at bfbr.org/detroit.

Annual Conference: San Francisco, CA April 20-22, 2018Join us as top BFRB experts, community leaders, and changemakers guide 500 individuals, families, clinicians, and researchers through a weekend of education, community, and healing.

With over 60 expert-led seminars, covering topics like advances in treatment and research, behavioral management, self-help, and emotional healing, you will build your own program for recovery on the topics that matter to YOU. Special workshops are offered for specific BFRBs as well as for kids, teens, and parents. A continuing education track for licensed professionals provides updates on latest in treatment advances from experts in this field. The conference is often described as life-changing, Please join us for this incredible event. Learn more at bfrb.org/conference.

Mindfulness-Based Impulse Reduction for BFRBs with TLC's Founder, Christina PearsonLive, interactive video classes for adults, teens, children and parents with a focus on BFRB shame reduction, practical living skills, and long-term recovery. Through participation in classes, students learn the cohesive, strategically adaptive Mindful Living Skills-Based approach to managing both hair pulling and skin picking that has kept Christina Pearson's recovery on track for years, and gain a heart-centered, experiential interpersonal network "in-the-world-you-live-in" for day-to-day support. Classes are ongoing: visit www.hasacademy.org for details.

Visit bfrb.org/events for detailed event information.

TLC Board of DirectorsBrian Haslam, PresidentJosie Sanctis, SecretaryRahel Smith, SPHR-SCP, TreasurerJon E. Grant, JD, MD, MPH, SAB ChairChaille Percival DeFaria, CPCCMarla Deibler, PsyDJoanna HeitzAnn Hodges, PsyDRobert McPherson, PhDRenae Reinardy, PsyD

StaffJennifer Raikes, Executive DirectorKathleen Griffith, Communications CoordinatorDana Hickerson, Office ManagerKaprece James, National Outreach ManagerAlice M. Kelly, Membership Services/Accounting ManagerLeslie Lee, Programs & Communications DirectorCorinne Lightweaver, Annual Fund DirectorTara Peris, PhD, BPM Director Emily Ricketts, PhD, BPM Project ManagerBetsy Wootten, Administrative Support

Claire Cameron, Intern Mackensie Freeman, Intern

TLC is a 501(c)(3) tax-exempt organization. Contributions are tax-deductible. Our tax ID number is 77-0266587.

InTouch is a quarterly publication of The TLC Foundation for Body-Focused Repetitive Behaviors Articles and letters may be submitted to leslie@bfrb.org

Copyright © December 2018. All Rights Reserved.Text deadline next issue: January 31, 2018

The information in this newsletter is not intended to provide treatment for body-focused repetitive behaviors. 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.

Contact us:The TLC Foundation for BFRBs716 Soquel Ave., Suite HSanta Cruz, CA 95062831-457-1004 . info@bfrb.org

The TLC Foundation for Body-Focused Repetitive Behaviors' mission is to end the suffering caused by body-focused repetitive behaviors, including hair pulling disorder and skin picking disorder.

www.bfrb.org InTouch 3

Community Members Making A DifferenceWhen Aneela Idnani’s husband Sameer Kumar “caught” her without eyebrows, the negative reaction she feared did not happen. Instead, Sameer chose to partner with Aneela to find a solution.

Using his analytical experience and her experience in mobile app designs, the husband and wife teamed up with two engineers, Kirk Klobe and John Pritchard, and developed the first prototype for the HabitAware Keen smart bracelet. The device is custom programmed by each individual to raise their awareness when they begin to engage in unwanted body-focused repetitive behaviors.

Aneela first contacted TLC in 2013, looking for solutions to her own trichotillomania. Now, four years later she has invented a technology to help many other BFRBers, as well as herself.

“Talking with so many people has helped me realize the disorder may always be with us, but it’s how we deal with it that counts,” said Aneela. “BFRBs are not welcome in our lives, but we can strive to get to a place where the space they occupy is tiny.”

Aneela supports TLC as an exhibitor, advertiser, and sponsor. Dr. Carol Novak, of TLC's Scientific Advisory Board, is also an advisor for HabitAware and the team is currently working with Scientific Advisory Board member Douglas Woods on a research study to track Keen’s efficacy.

"Professionally, Keen by HabitAware would not exist if not for the TLC team, its Board Members who coached us on, and the TLC community who expressed excitement for our initial prototypes. Personally, TLC has been a huge part of my recovery and I am forever grateful. It is why we give back...Without TLC, we would all still be so very alone. So please consider giving," says Aneela.

Aneela takes every opportunity to raise funds for TLC and raise awareness of TLC through her website, blogs, public education outreach, business pitch contests, related conferences she attends, and friends. Her latest donation was a $300 prize she won from the Change Health Pitch. Recently, she championed the BFRB cause on a panel about mental health in the tech industry.

In addition to financial support, Aneela consistently includes TLC in HabitAware's public relations and marketing programs. As if fundraising for this cause and promoting TLC were not enough, she also volunteers by supporting our community online. Recently, she became a volunteer moderator for the largest trichotillomania group on Facebook. “Aneela's dedication to our community is inspiring," said TLC Programs & Communications Director Leslie Lee. "All of us at TLC are grateful to Aneela for her commitment to our mission and programs."

For more than 20 years, Aneela has struggled with hair pulling but today she no longer hides under makeup and fake smiles. She has created a product that not only helps her, but countless other BFRBers as well, and she gives back to the BFRB community that has given her strength and hope.

"Personally, TLC has been a huge part of my recovery and I am forever grateful. It is why we give back."

Aneela and her husband, Sameer, co-founders of HabitAware, smart technology for repetitive behaviors,

have made supporting The TLC Foundation for Body-Focused Repetitive Behaviors a part of their mission, and continually seek creative ways to support TLC's efforts to

foster community and fund research for a cure.

4 InTouch www.bfrb.org

#SeeMeStand: BFRB Awareness WeekThis year’s successful BFRB Awareness Week campaign, spearheaded by the TLC Task Force with special contributions from TLC interns Claire Cameron and Mackensie Freeman, deserves a standing ovation.

Task force members drew inspiration from the methods of anti-bullying and other health awareness campaigns as they designed their program. As BFRB Awareness Week approached in early October, they challenged TLC community members and their networks of friends and family to participate by submitting a photo of themselves, near a local landmark, holding a #SeeMeStand sign.

“We thought we should show the public that body-focused repetitive behaviors exist in all our communities—and all over the world—and that people are willing to take a stand,” said Claire. “I was overwhelmed and humbled by the number of people we got involved. We ended up with over 300 participants, which was way more than I thought we would get.”

The video created from all the photos submitted can be seen at bfrb.org/seemestand, It's had over 75,000 views to date.

The task force sold t-shirts online that were designed by Nick Santamorena. Several particiapnts contributed to the success of the campaign with personal Facebook fundraisers.

The task force initiated a contest and awarded a prize to the person who recruited the most submissions from the non-BFRBers holding #SeeMeStand posters. Thirteen-year-old Samantha Saulino won the #SeeMeStand contest by a significant margin with 158 submissions, inspiring her parents to send in a donation matching the number of submissions she generated. The prize was a coveted free conference registration.

The #SeeMeStand campaign reached more than one million people. Claire credits the success of the campaign to its design, particularly the contest and the structure that allowed closeted BFRBers to participate in raising awareness without having to self-identify as a BFRBers.

"The community's response and participation far exceeded our hopes," says Leslie Lee, TLC's Programs and Communications Director. "It's really incredible to see so many people speak out about something that often causes so much shame. We're so grateful for this community's passion."

Samantha Saulino

www.bfrb.org InTouch 5

If you are 15-27 years old, have a passion for raising awareness aboout BFRBs, and are interested in developing skills in public relations, program development, and community outreach, you could be the next member of the TLC Task Force!

Formerly the Millennial Task Force, the TLC Task Force is dedicated to supporting TLC's mission to end the suffering caused by body-focused repetitive behaviors.

Task Force membership is a one-year commitment; the term runs from April to April of each year. It is a non-compensated volunteer position; however, members are expected to participate in a monthly conference call and actively contribute to projects and campaigns throughout the year. Time commitment is approximately 10-15 hours per month.

Task force members work as a team to create and implement exciting outreach campaigns for the community. Projects include BFRB Awareness Week, an online advice column, ambassador training, and targeted outreach campaigns.

To learn more and apply, visit bfrb.org/taskforce.

Applications will be accepted until January 30, 2018.

TLC and the task force are committed to building a culturally diverse community. Minorities, individuals with disabilities, and men are encouraged to apply.

Navigating end-of-year activities, holidays, family gatherings, financial stress, and the other less joyful aspects of the part of the year can get the best of anyone. But when you suffer from BFRBs, that stress and overwhelm can manifest itself in a physical way. So, we've put together this list of five previously recorded webinars that teach some critical skills for navigating this time of year, while hopefully preventing an increase in BFRB behavior.

You will find these videos at bfrb.org/holidayguide.

Holiday Survival Guide5 VIDEOS TO HELP MANAGE BFRBS

DURING THE BUSIEST TIME OF THE YEAR.. . AND BEYOND

Enhancing Gratitude and Joy During the Holiday Seasonwith Sherrie M. Vavricheck, LCSW

Radical Self Acceptance for BFRBs with Kimberley Quinlan, LMFT

Managing your BFRB when Life Happens with Fred Penzel, PhD

Mindfulness and Acceptance for BFRBs with Elena Fasan, MSW, and Lauren McMeikan, MA of the OCD Center of Los Angeles

Join the TLC Task Force

6 InTouch www.bfrb.org

Massachusetts General Hospital have seen more than 100 (out of 300+) research participants, making this already the largest neuro-imaging study ever conducted of BFRBs. And we aren’t done yet.

Our research teams have been amazed: Many hundreds of members of this community have volunteered to be participants in these studies – willing to devote two days to the process of interviews, tests, blood draws, and brain scans required, some flying in at their own expense from as far away as Mexico.

The work being done now will reverberate for years, across generations. We are putting together millions of pieces of information from hundreds of people that will help answer the questions we all have about the nature of BFRBs – from neurology to genetics to diet to emotional drivers, and much more. Most importantly, what we learn will help guide us to more effective treatments.

Outreach & EducationWe’ve been laying the groundwork this year for the expansion of outreach, support and education programs at the local level. We’ve created tools and trainings to make it easier to speak out about BFRBs. And we’ve begun piloting new ways to deliver our educational programs.

Throughout this year, TLC’s young people have been hard at work raising awareness of BFRBs and building community among their peers. In January, the Millennial Task Force* launched a successful Parent Outreach Campaign featuring a video they created to facilitate communication between parents and their BFRB kids. You can watch and share it at bfrb.org/forparents.

At our annual Conference this spring, Task Force members trained 21 new TLC Ambassadors, with tools and guidelines for giving talks in their schools and home towns. They continue to host their popular online advice column “Trichs ‘n Picks” on Tumblr and are developing resources for underserved groups including those living in rural areas, men, people of color, and members of the LGBTQ community.

#SeeMeStand Campaign – The Task Force’s Awareness Weekoutreach campaign: “See Me Stand for BFRBs” reached over 1 million people across all social media

platforms and included contributors from all over the world! (See p. 4).

Mini-Cons! Piloting a new, more efficient model for delivering our education programs, we held two “Mini- Cons” this year in San Francisco and Washington DC. These events combined a day of educational programs for BFRBers and their families with a concurrent Professional Training Institute for clinicians. This reduced staff travel and venue expenses, and helped us strengthen connection with our local volunteers in preparation for holding national conferences in those cities. Together we provided information and support to people effected by BFRBs and their families, and trained 55 clinicians in best practice treatment for BFRBs.

This is My Brave – TLC Board Member, Chaille DeFaria, CPCC, and BFRB treatment provider Karen Pickett, MFT, teamed up to bring TLC together with This Is My Brave, a story-telling platform for individuals to share their true stories of overcoming mental illness to end stigma. The event, held in Los Angeles in January, increased public awareness of BFRBs and other mental health disorders and raised $20,000 to support TLC's outreach and educational programs! We are proud to have had the opportunity to partner with This Is My Brave in shining a light on mental health issues while giving BFRBs the attention they deserve.

Impact Report, continued from page 1

Participants in the Ambassador Training Program receive hands-on training in how to give educational talks in their communities. The training will be held again at the 2018

Conference in San Francisco, April 20-22.

*The Millennial Task Force has changed its name to The TLC Task Force in order to better reflect its commitment to youth and young adults.

www.bfrb.org InTouch 7

Media Training Webinars – In September, TLC’s PR consultant Sharene Azimi of Mission Communications hosted two online trainings to help empower our community to effectively share our stories with the media. The first session, “Sharing Your Voice,” offers training in how to write letters to the editor and opinion pieces for your local media outlets. The second webinar, “Spreading the Word,” is intended for support groups or volunteers who want to host local events. It addresses how to get events listed in your local newspaper and how to invite reporters to cover larger happenings. You can view both recordings at bfrb.org/ambassadors.

Looking Forward: What Your Year-End Gifts Will Accomplish in 201825th Annual Conference in San Francisco - Sue Swedo, MD, Chief, Pediatrics & Developmental Neuroscience Branch at the National Institute of Mental Health, will join us as a keynote speaker, April 20-22, 2018. Registration is already live at BFRB.org – we hope you will join us!

Early Career Awards Program - To encourage the next generation of researchers and clinicians to pursue careers in this field, we have initiated an early career award program. Awardees will receive scholarships, recognition and mentoring from members of our Scientific Advisory Board. Those of you attending next Spring’s Annual Conference in San Francisco will have an opportunity to meet our first awardees and see the fruits of their work.

Online Training For Clinicians - As we continue to update and re-think how we deliver local services, we’ve begun work on an online, dynamic version of

our Professional Training Institute to replace our DVD program, The Virtual Professional Training Institute. Anticipated launch late Spring 2018!

Regional Outreach – We are determined to ensure that all people with BFRBs have access to help, support, and encouragement in our own communities. To advance this goal, we have hired a National Outreach Manager, whose focus will be on local programming around the country, working with volunteers, and building a pilot outreach program in several key metropolitan areas.

BFRB Precision Medicine Initiative – Our research teams will continue seeing volunteers in 2018 with the goal of completing all 300 participants by the end of the year. If you are in Boston, Chicago, or Los Angeles, email research@bfrb.org, to see if you meet criteria to participate. And join us at our Annual Conference in April to hear updates and early analysis, and ask questions of the lead researchers.

These programs are in service to the mission we all share: to end the suffering caused by BFRBs. We need your annual support – and your voice and volunteer efforts - now more than ever to carry out these ambitious plans. Please don’t forget to make a Year-End donation at BFRB.org today. You make it all happen!

Thank you.

With love and gratitude, Jennifer Raikes

Impact Report

Join the Sustainers Circle: TLC’s Monthly Giving Program!

As a member of the Sustainers Circle, TLC’s Monthly Giving program, you can ensure that the Foundation’s programs and services are available to everyone in need. The Sustainers Circle allows donors the convenience of supporting TLC through an automatic monthly gift by credit card or by transfer from their bank account. Signing up is both safe and easy. Kindly indicate your interest on the enclosed response envelope or sign up at bfrb.org/donate. Questions? Contact Corinne Lightweaver, Annual Fund Director at 831-457-1004 or corinne@bfrb.org.

DONATE VOLUNTEER CONNECT

Visit bfrb.org or find us on social media @tlcbfrb

Have you considered including a gift to TLC in your will?Naming TLC as a beneficiary in your estate is a surprisingly simple process. It is, however, a decision that can have a lasting impact on future generations of family members and millions of people around the world who suffer from BFRBs.

If you (or a parent or grandparent) are preparing a will or working with a financial advisor on your estate plans, please contact us about the possibility of a planned gift in support of the important work of TLC. We will be glad to provide sample language, discuss options for designating your gift and answer any questions you may have. Contact Corinne Lightweaver at corinne@bfrb.org or 831-457-1004.

Support TLC When You ShopAre you an Amazon.com shopper? If so, visit smile.amazon.com and select The TLC Foundation for BFRBs as your preferred charity. Then, every time you shop from smile.amazon.com, a percentage of your purchase will be donated right back to TLC!

Volunteer for ResearchResearchers need YOU! Help advance the understanding of body-focused repetitive behaviors by participating in a research study. Volunteer by completing an online survey, or participating at one of the research centers in the US. 18 different studies are currently seeking participants. Learn more @ bfrb.org/researchvolunteer.

N E W S U P P O R T

GROUPSYou are not alone!

Get details on these and other groups in the US and 8 other countries at

www.bfrb.org/support

ILLINOISChicagoSufferers of all BFRBs welcome. Meets the 1st and 3rd Tuesdays of the month from 6:30-8:00PM, at 770 N. LaSalle Dr., #410, Chicago, IL 60654. Email lauren@pickingme.org, or call (312) 964-5388 for more information.

PENNSYLVANIAPittsburghA free, therapist-facilitated group for anyone suffering from BFRBs, including children and adults.First meeting is Jan. 11Please RSVP to (724) 799-8300

TENNESSEESavannahFor adults with BFRBs. Monthly meetings are held the first Sunday night of every month @ 6:30 pm. A suggested $1 donation will be collected to cover printing costs. For more information, please contact johanssoncounseling@gmail.com for more information.

START A SUPPORT GROUPIn Your Town Learn more at bfrb.org/startagroup.

Action Alerts

Get Involved!