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  • A TLC Research Initiative CREATING NEW HOPE and New Treatments for Hair Pulling and Skin Picking Disorders

  • 2

    RE: WE NEED A NEW APPROACH

    TO BFRB RESEA RCH

    Dear friends,

    The best research suggests that 3% o

    r more of the popu lation lives with h

    air pulling or skin

    picking disorders, also known as BF

    RBs (Body-Focuse d Repetitive Behav

    iors). That’s more

    than 10 million pe ople in North Am

    erica alone. Today , there are very few

    treatment options

    available for them , and typical succe

    ss rates are only 10 -20%.

    Drastic cuts in fed eral funding make

    it nearly impossib le to secure public

    money for BFRB

    research, leading t o chronically unde

    rfunded research e fforts that have fai

    led to produce

    new treatment opt ions. As a result, w

    e still lack foundat ional scientific kn

    owledge about the

    genetic and biolog ical mechanisms f

    or hair pulling and skin picking disor

    ders.

    With your help, w e have an opportu

    nity to transform the entire landsc

    ape of treatment

    possibilities for h air pulling and sk

    in picking.

    Let us share with y ou TLC’s vision fo

    r the BFRB Precisi on Medicine Initia

    tive.

    Sincerely,

    Jon E. Grant

    Jon E. Grant, JD , MD, MPH

    Chair, Scientific Advisory Board

    The TLC Founda tion for Body Fo

    cused Repetitiv e Behaviors

    Professor of Psy chiatry and Beh

    avioral Neurosc ience

    University of Ch icago

    “I started picking when I was 5 or 6.”

    Jon E. Grant, J.D., M.D., M.P.H., Advisory Chair Professor of Psychiatry and Behavioral Neuroscience University of Chicago, IL

    Nancy J. Keuthen, Ph.D., Advisory Vice Chair Psychiatric Neuroscience Program Massachusetts General Hospital Harvard Medical School Boston, MA

    Fred Penzel, Ph.D., Advisory Secretary Director, Western Suffolk Psychological Services Huntington, NY

    Darin Dougherty, M.D., MSc. Director, Neurotherapeutics Division, Massachusetts General Hospital Harvard Medical School Boston, MA

    Christopher A. Flessner, Ph.D. Assistant Professor, Dept. of Psychology Kent State University, OH

    Martin Franklin, Ph.D. Director, COTTAGe University of Pennsylvania School of Medicine Philadelphia, PA

    Joseph Garner, Ph.D. Dept. of Comparative Medicine Stanford University Veterinary Service Center Stanford, CA

    Ruth Golomb, M.Ed., LCPC Behavior Therapy Center of Greater Washington, Silver Spring, MD

    David Haaga, Ph.D. Chair, Psychology Department American University, Washington, D.C.

    Charles S. Mansueto, Ph.D. Director, Behavior Therapy Center of Greater Washington Silver Spring, MD

    Suzanne Mouton-Odum, Ph.D. Private Practice Houston, TX

    Carol Novak, M.D. Department of Psychiatry HealthPartners Behavioral Health Minneapolis, MN

    John Piacentini, Ph.D., ABPP Director, UCLA Child OCD, Anxiety and Tic Disorders Program UCLA Semel Institute for Neuroscience and Human Behavior Los Angeles, CA

    Jeremiah M. Scharf, M.D., Ph.D. Dept. of Neurology Harvard Medical School Boston, MA

    Dan Stein, M.D., Ph.D. Dept. of Psychiatry and Mental Health University of Capetown South Africa

    John Walkup, M.D. Division of Child & Adolescent Psychiatry New York-Presbyterian Hospital Weill Cornell Medical College New York, NY

    Douglas Woods, Ph.D. Dean of the Graduate School, Professor of Psychology, Marquette University, Milwaukee, WI

    Harry Wright, M.D., M.B.A Neuropsychiatry & Behavioral Science Univ. of South Carolina School of Medicine Columbia, SC

    SCIENTIFIC ADVISORY BOARD (SAB)

  • 3

    Don’t you think it’s time we created better solutions for ourselves and our children?

    “I’ve been pulling my hair out for over 30 years.”

    “My parents took me to doctors, therapists and treatment programs all over the state.”

    “I’m tired of suffering.”

    “My doctor had never heard of trichotillomania.”

    “I have tried absolutely everything.”

    “We’ve spent thousands on counseling and the behavior always returns.”

    Charles S. Mansueto, Ph.D. Director, Behavior Therapy Center of Greater Washington Silver Spring, MD

    Suzanne Mouton-Odum, Ph.D. Private Practice Houston, TX

    Carol Novak, M.D. Department of Psychiatry HealthPartners Behavioral Health Minneapolis, MN

    John Piacentini, Ph.D., ABPP Director, UCLA Child OCD, Anxiety and Tic Disorders Program UCLA Semel Institute for Neuroscience and Human Behavior Los Angeles, CA

    Jeremiah M. Scharf, M.D., Ph.D. Dept. of Neurology Harvard Medical School Boston, MA

    Dan Stein, M.D., Ph.D. Dept. of Psychiatry and Mental Health University of Capetown South Africa

    John Walkup, M.D. Division of Child & Adolescent Psychiatry New York-Presbyterian Hospital Weill Cornell Medical College New York, NY

    Douglas Woods, Ph.D. Dean of the Graduate School, Professor of Psychology, Marquette University, Milwaukee, WI

    Harry Wright, M.D., M.B.A Neuropsychiatry & Behavioral Science Univ. of South Carolina School of Medicine Columbia, SC

    Supporters and sufferers gather for a group photo at a recent TLC event.

  • 4

    Two, unique girls ...

    cope wit h and ma

    nage this disorder

    on her o wn. I’m

    proud of

    how well she has

    done, bu t I know

    she stru ggles dai

    ly.

    As a mot her, I jus

    t want h er to be

    able to liv e her life

    --to take a

    shower o r look in

    the mirro r or wea

    r a short -sleeve s

    hirt with out

    fear tha t she’ll pi

    ck her sk in; to hav

    e friends hips and

    dreams a nd

    adventur es withou

    t having to spend

    hours a day man

    aging her

    skin. If I could ha

    ve one w ish in the

    world, it would be

    to see m y

    daughter free of

    this disor der once

    and for all.

    BANDAGES WON’T CU

    RE MY

    DAUGHTER ’S SKIN PI

    CKING

    My daughte r Molly star

    ted picking her skin wh

    en she was five

    years old. B y first grad

    e, she’d hav e forty to f

    ifty open so res

    on her body at a time.

    People wou ld stare an

    d ask her if

    she had ch icken pox o

    r poison ivy . Her cloth

    es were alw ays

    covered wit h blood.

    For years, I tried to pr

    event her f rom picking

    any way I

    could. At ni ght I put s

    ocks over h er hands, s

    ecuring the m

    in place wit h tape. Eac

    h morning I would clea

    n her woun ds,

    cover them with banda

    ges, and th en place tu

    bular gauze

    over her ar ms and legs

    , taping the openings t

    o her skin. I

    tried rewar ding her wi

    th money f or making i

    t through a day

    without pic king. I purc

    hased band ages online

    by the cas e.

    Molly start ed seeing p

    sychiatrists and therap

    ists at age six.

    I’ve taken her all over

    the countr y and spent

    thousands of

    dollars seek ing an effe

    ctive treat ment. At a

    special clin ic in

    Hartford w e were told

    , “We can t reat her if

    you want, b ut

    there’s alm ost a 100 p

    ercent rela pse rate.”

    We left fe eling

    discouraged and defea

    ted. We’ve tried variou

    s medicatio ns

    and supplem ents includi

    ng Prozac, Inositol, an

    d NAC. Non e of

    these treat ments has

    been able t o cure her

    skin picking .

    Molly now h as permane

    nt scarring on her fac

    e and back .

    She’s had t wo bouts o

    f cellulitis, a dangerous

    skin infect ion.

    Today, as a young wom

    an in colleg e, she has

    had to lear n to

    Molly’s Story

    Lily and her mother.

  • 5

    Two, unique girls ... ... the SAME STORY.COMMON ISSUES

    FOR MILLIONS OF PEOPLE WITH BFRBs

    ■ THEIR BEHAVIOR BEGINS WHEN YOUNG

    ■ THEY ENDURE YEARS OF SUFFERING

    ■ THEY EXHAUST ALL TREATMENT POSSIBILITIES and are forced to manage their lives around daily picking and pulling

    wig. I stil l spend one or two hours every day pulling. My

    mom says that my grandfather used to pull his hair too,

    so she’s worried about trichotillomania getting passed on

    in our family.

    I’ve tried everything possible to stop pull ing, but nothing

    seems to help: medications, supplements, therapists,

    acupuncture, reiki, and every f iddle tool there is. Every

    time I try a new medicine or treatment, I secretly

    get super-excited and think, “Maybe this wil l be the

    ONE and I won’t have to pull anymore.” Then I’m more

    discouraged than ever when it doesn’t help. I’ve pretty

    much given up on medicines now, because it’s so

    disappointing to try another one, get my hopes up, and

    then have it not work again. I’m really nervous about starting high school this Fall--

    being at a new school, where I won’t know anyone, and

    getting all the qu

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