INDIVIDUALIZED
THERAPIES
NEW HOPE &
NEW TREATMENTS for HAIR PULLING &
SKIN PICKING
DISORDERS
TLC SCIENTIFIC ADVISORY BOARD Nancy J. Keuthen, Ph.D., Advisory Vice Chair Psychiatric Neuroscience Program Massachusetts General Hospital Harvard Medical School Boston, MA
, JD, MD, MPH Jon E. G rant ard c Advisor y Bo Chair, Scientifi nter Ce ia Lear ning e Tr ichotilloman al Neuroscienc and Behavior ry at hi yc Ps Professor of Chicago University of
B RESEARCH ACH TO BFR O R P P A W E E NEED A N
RE: W
lling or skin es with hair pu liv on ti la pu po more or more of the aviors). That’s 3% eh B at e th iv ts it et es gg ep ch su ody-Focused R ent options The best resear n as BFRBs (B very few treatm ow e ar kn e so er al th s, y, er da picking disord erica alone. To le in North Am op pe 10-20%. n ly io ill on m e than 10 s rates ar es cc su l ca pi em, and ty r BFRB available for th blic money fo pu re cu se to ible to produce nearly imposs at have failed nding make it th fu l ts ra or de eff fe ch in out the resear Drastic cuts knowledge ab underfunded c ly ifi al nt ic ie n sc ro al ch on ti ing to ill lack founda research, lead sorders. s a result, we st A s. on skin picking di ti d op t an en ng tm lli ea pu tr ir ew n nisms for ha ological mecha treatment genetic and bi re landscape of ti en e th m or sf tunity to tran have an oppor e w p, el h r u g. in With yo and skin pick r hair pulling fo es ti li bi si os p iative. Medicine Init on si ci re P B BFR vision for the ith you TLC’s w e ar sh us et L
Dear friends,
Sincerely, Jon E. Grant
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 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 David Pauls, Ph.D. Psychiatric & Neurodevelopmental Genetics Massachusetts General Hospital Boston, MA 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 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. Professor and Department Head Department of Psychology, Texas A&M University Harry Wright, M.D., M.B.A Neuropsychiatry & Behavioral Science Univ. of South Carolina School of Medicine Columbia, SC
“I started picking when I was 5 or 6.”
Don’t you think it’s time we created better solutions for ourselves and our children?
Supporters and sufferers gather for a group photo at a recent TLC event.
“I’ve been pulling my hair out for over 30 years.”
“My doctor had never heard of trichotillomania.”
“My parents took me to doctors, therapists and treatment programs all over the state.”
“We’ve spent thousands on counseling and the behavior always returns.”
“I’m tired of suffering.”
“I have tried absolutely everything.”
Two, unique girls ... RE MY U C T ’ N O SW BANDAGE ’S SKIN PICKING R iv e DAUGHTE sh e w a s f sk in w h e n
r s p ic k in g h e o p e n so re lly st a rt e d y to f if ty o rt M o r f e te v h sh a g ’d h e r if e My dau g ra d e , sh e a n d a sk h st re ir a f d st y B ld . u o ld a y s c o v e re o p le w y e a rs o s w e re a lw a ti m e . P e e t th a lo y c d r o e b . H on her p o is o n iv y en pox or h a d c h ic k . o u ld . y way I c w it h b lo o d p ic k in g a n m e ro f la r p e e m in c vent h e c u ri n g th ie d to p re s tr , em s I d , th n r a rs e a h v e r her For y ds, co socks ove her woun t n u a p s le I c t rm ld h a u r her A t n ig rn in g I w o gauze ove . Each mo e tu b u la r c la p re w a rd in g w it h ta p e d n e ie k in . I tr s , a n d th s e g r g. a e d h n a to b w it h h o u t p ic k in e n in g s a d a y w it in g th e o p h p g u ta ro , s th g le it and r m a k in g se. money fo b y th e c a e lin h e r w it h n o s e g a d n a b ed s ix . I p u rc h a s ts a t a g e d th e ra p is n a of ts s d is n tr a th o u s s y c h ia d s e e in g p and spent e in y rt ic tr ta n lin s u c o l c lly Mo s p e c ia e r th e n t. A t a e h e r a ll o v t n tm u e a b k e t, ta tr n e I’ v you wa f f e c ti v e a t h e r if e k in g a n e e e lin g e c a n tr e d o lla rs s e “W , W e le f t f ld to .” re te e ra w e e s w re la p ti o n s a n d H a rt f o rd u s m e d ic a 0 p e rc e n t o 10 ri a a v t e d s o ie e ’v e tr e o f th e s th e re ’s a lm f e a te d . W NAC. Non e d d n d a n l, a o d it e s d is c o u ra g ro z a c , In o ic k in g . in c lu d in g P h e r s k in p ts n e re u m c le p to p su le b a n e e ts h a s b ck. tr e a tm e n ce and ba on her fa g in c ti o n . rr e a f c in s anent u s s k in rm ro e e p g n s a a d h a , M o lly n o w o f c e llu lit is tw o b o u ts d a h ’s e h S
ry o t S olly’s
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to cope t o le a r n d ll a h s a how we eh ll e g e , s h roud of o p c ’m in I n . a own ng wom on her s a you is o r d e r d is s d a il y . h Today, a le t g strug anage e m h d s ea n a w o w it h I kn -- t o t a k h e r li f e one, but e d ut v s li h a o h it t tw o b le she to be a e v e s h ir le r s e nd h t a r t s o n h dream st wa ar a s ip s a n d h e r , I ju r or we t h o s o r d r m ir n e h m a ie g fr As in t h e m a n a g in to have o r lo o k e r s k in ; rs a day see my h u o o k shower t h ic e d p b n l w o u ld to spe t s h e ’l a it g h , in t ld v r r a a wo fe out h h in t h e ll . r e s w it h o n e w is e nd for a adventu v a a h e c ld n u o o r c e I d r s k in . I f t h is d is o free of r e t h g u da
Lily and her mother.
You can help change their story. We have an opportunity, through the BPM Initiative, to make sure that Molly, Lily, and millions like them have effective treatment options just a few short years from now.
COMMON ISSUES FOR MILLIONS OF PEOPLE WITH BFRBs
■■ THEIR BEHAVIOR BEGINS WHEN YOUNG ■■ THEY ENDURE YEARS OF SUFFERING
... the SAME STORY. Lily’s Story
■■ THEY EXHAUST ALL TREATMENT POSSIBILITIES and are forced to manage their lives around daily picking and pulling
| I DON ’ WEAR A T WANT TO W IG F O R EVER | It w a s m y f ir s t h ome gam were 4 e
00 peop on the b le in t h e a s k e t b a ll lo c k e r r o b le a c h e r team. T om beca s here a n d u se I was I was cr the who y in g in t s o t e r r if le s c h o o he ie l d w it h o u t m to go ou the seas t in f r o n y w ig o n on, but . t of e I v e d r y s in g le id m a n a li k e c r a z g e t o f in y when game m is h y heart I le f t t h e w a s s t il l lo c k e r r o p o u n d in g om. I started pulling ou t m I was co y hair in mpletely second g bald and rade. By spend on had to s seventh e or two tart wea grade, hours ev ring a w ery day ig. I still pulling. M y mom s ays that
my gran dfather used to trichotillo pull his h mania ge air too, s tting pas o she’s w sed on in orried ab our family out I’ v e t r ie . d everyt h in g p o s s ib seems t le t o s t o o h e lp : m p p u lli n g e d ic a t io n acupunc , but no s , s u p p le t u r e , r e ik t h in g m e nts, the i, a nd ever I try a n r a p is t s , y f id d le ew med tool ther ic in e o r e x c it e d treatme e is . E v e a n d t h in nt, I sec r y t im e k , “M have to r e a t y ly b e get supe t h is w il l p u ll a n y m rbe the O o r e .” T h w h e n it NE and e n I’ m m d o e s n ’t I w o n ’t o r e d is c h e lp . I’ v e now, bec ouraged pretty m a u s e it ’s than ev u c h g iv e s o d is a p er hopes up n up on p o in t in g t o , and th m e d ic in e s en have try anot it n o t w her one , get my o r k a g a in I’ m r e a lly . nervous about st at a new a r t in g h s c h o o l, w ig h s c h o here I w a ll t h e q o l t h is F o n ’t k n o u e s t io n s a ll--b e in g w anyon a n d lo o k v a r s it y e, and g s from o soccer, e t t in g t h so every e r k id s . It ’s e x h a I’ ll b e p la o n e w il l u s t in g h y in g s e e a v in g t o m e w it h k n o w in g out my e x p la in t that peo w r ig . ic h p le s t il l w over an d over, o n ’t u n d a e nd r stand. I w o u ld g iv e a n y t h in g t o t o li v e a b e a b le n o r m a l li to stop f e -- p la y in p u lli n g . I s lu m b e r g soccer ju s t w a n p a r t ie s -, g o in g s w t it h o u t b s e lf -c o n w im m in g e in g c o n s c io u s a , h a s v t b a in o n g ut my h t ly e m b a w o u ld b e a ir . T h e rrassed s o m e t h in b e s t b ir t and g t o h e lp h d ay prese me stop nt ever p u lli n g o nce and f o r a ll.
Our Vision for the BPM Initiative This is an extraordinary opportunity to change the course of the future for ourselves, our families, and the next generation growing up with BFRBs.
... we could pinpoint each
person’s BFRB profile, identifying the motivations and habits that make up an individual’s particular type of picking or pulling behavior.
... we could match that
BFRB profile to specific genetic and biological origins.
... we had a suite of
treatments carefully tailored to these genetic and biological factors for each BFRB profile.
... those treatments
resulted in complete BFRB remission for 7 out of 10 people.
Precision Medicine Will Make It Possible WHAT IS PRECISION MEDICINE?
Precision Medicine is the cutting edge of medical research and treatment. Across the medical spectrum, we are learning that complex diseases and disorders require very individualized therapies. The BFRB Precision Medicine Initiative is bringing these proven research strategies to bear on BFRBs. Precision Medicine uses genetic and biological indicators to describe an individual pattern of disease. It has revolutionized cancer treatment, and the National Institute of Mental Health has identified Precision Medicine as the key to discovering transformative new treatments for mental health disorders.
Precision Medicine begins with the understanding that external symptoms are not the best guide to selecting treatments. Two individuals with tumors in their lungs might require very different therapies, based on the genetic characteristics of those tumors. Likewise, we know that two people who pull out their hair or who pick their skin respond differently to the same treatments, underscoring the importance of unique patient approaches based on the genetic and biological sources for their behaviors.
The BFRB Precision Medicine Initiative is founded on a belief that this cutting-edge approach to research and treatment will transform the landscape
of treatment possibilities for hair pulling and skin picking.
Precision medicine for mental disorders could be even more transformative than for cancer.” – Tom Insel, M.D., Director of National Institute of Mental Health
... her friend’s. Just as no two snowflakes are alike, the diversity of indicators is immense and they are key to successful treatment.
Felicia’s genetic and biological indicators are vastly different from ...
Jillian Clark: www.jillianclarkphotography.com
Actual BFRB sufferers.
10-20%
YEARS1-3
BFRB TREATM F EO
SUCCESS T EN
Timeline
PHASE 1
BPM Initiative
PROFILE TESTING
ANIMAL STUDIES
Leading scientists from 20+ participating research institutions across the country will analyze the detailed behavioral profiles for hundreds of patients over three years.
Researchers at Stanford University’s Department of Comparative Medicine will conduct complementary animal studies.
Map the behavioral, genetic, and biological landscape of BFRBs.
Imaging centers at Massachusetts General Hospital, University of Chicago, and UCLA will conduct blood tests and brain scans for all study participants.
IMAGING
By the end of Phase 1, we expect to identify six to ten different BFRB behavioral profiles and their corresponding genetic and biological signatures. These profiles will provide the critical foundation for Phase 2.
CURRENT RAT
Poised for Rapid Success: COLLABORATION The BPM Initiative is driven by unprecedented collaboration among the leading BFRB researchers. SCIENCE Precision Medicine has emerged as the gold standard for medical research and will enable us to rapidly identify new BFRB treatments. FUNDING For the first time ever, the investment of private donors will provide BFRB research efforts with adequate funding. ENGAGEMENT Ongoing dialogue with the National Institute of Mental Health and the pharmaceutical industry position the BPM Initiative for future collaboration and partnerships.
7 Years | 70% Treatment Success With your support, we are confident the BPM Initiative will achieve successful BFRB treatment rates of 70 percent or higher within seven years. This is an ambitious goal. We owe it to the millions who live with these disorders to set our sights high. Medical research has already achieved similar treatment success rates in other, more complex mental health disorders such as depression and schizophrenia. The National Institute of Mental Health has identified Precision Medicine as the approach that will produce the most rapid breakthroughs in mental health research.
NEW TREATMENTS
YEARS4-7
PHASE 2
The genetic and biological patterns that we identify in Phase 1 will allow us to identify promising new treatments.
Identify new treatments tailored to each person’s BFRB profile.
CLINICAL TRIALS With additional public and private investment, the BPM Initiative will conduct clinical trials of new BFRB treatments.
Now Is the Time THE NEED FOR NEW TREATMENT OPTIONS IS URGENT. Hair pulling and skin picking disorders affect millions of people; and yet their likelihood of long-term remission, based on today’s treatments, is extremely low. We have consensus across the entire research community around this approach. There is no other BFRB research effort of this scale or with this degree of support anywhere in the world.
Together, with your investment, we can make an incredible difference— we can change the landscape of BFRB treatment possibilities forever.
TLC has assembled an incredible team of dedicated scientists, comprised of the leading BFRB researchers across the country.
Stanford University
UCLA Texas A&M University
Massachusetts General Hospital
New York-Presbyterian Hospital
University of Pennsylvania School of Medicine
Kent State University University of Chicago
From left to right, Justin, Taylor, Lauren, and Kimberly Boswell.
Meet the Boswells
My 17-year-old daughter, Taylor, recently started pulling her hair. As her dad, it breaks my heart to see her suffer. So, I spent seven months learning everything I could about trichotillomania. I was shocked to learn that there are very few, if any, effective treatment options. We tried all kinds of prescription medicines. We tried dietary supplements. We met with therapists and psychiatrists. And still, we struggle to find the answers that will help our daughter.
PHASE 1 BUDGET (YEARS 1-3): Identify BFRB Behavioral Profiles $1,230,000 Analyze BFRB Neurobiology $3,100,000 Conduct Complementary Animal Studies $770,000 TOTAL $5,100,000
Our family is supporting the BPM Initiative with one of the largest philanthropic gifts we have ever made. We intend to do everything in our power to ensure that this suffering ends, for Taylor and for the millions of people like her, who live with BFRBs every day. We hope you’ll join us.
We Are the Ones If...
you live with the daily challenge of hair pulling or skin picking, you have visited countless therapists, doctors, and workshops, and find the consistent lack of answers maddening,
TLC has been the trusted leader in BFRB education, advocacy, and research for over twenty years. The groundbreaking BPM initiative is an exciting turning point in our history, a bold step towards a brighter future for all of us.
you want to spare others the suffering that you and your family experience,
then
you understand the critical need for this research. Please join us. Invest in TLC’s BPM Initiative and a new future for those who suffer hair pulling and skin picking disorders. SUCCESS WILL DEPEND ON YOU.
For more information about the BPM Initiative, please contact TLC Executive Director Jennifer Raikes at Jennifer@trich.org or 831-457-1004.
Trichotillomania Learning Center 207 McPherson Street, Suite H Santa Cruz, CA 95060 A 501(c)3 non-profit organization.
www.trich.org/research