Tourette Association of America - Amazon S3 · Tourette Syndrome and Tic Disorders is only made possible by the support of the communities we serve. The Tourette Association of America

Celebrating Real People and Real ProgressTourette Association of America

F I S C A L Y E A R 2 0 1 8

A N N U A L R E P O R T

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Tourette Syndrome (TS) is a neurodevelopmental

disorder that becomes evident in early childhood

or adolescence. It is part of the spectrum of Tic

Disorders and is characterized by uncontrollable

motor and vocal tics.

While the onset and diagnosis of TS may take

place in a child’s early years, the condition is

lifelong. Some tics may be transient, but for

66% of individuals TS persists into adolescence

and adulthood. In addition to tics, 86% of

people with TS are a ected by at least one

co-occurring condition including Attention

Deficit Hyperactivity Disorder (ADHD),

Obsessive Compulsive Disorder (OCD), and

learning disabilities.

There is no cure for TS, but thanks to years of

dedicated research, there are various treatment

options available.

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TOURETTE ASSOCIATION

Welcome4

Mission & History5

Our Impact6

Our Work10

Research10

Awareness13

Public Policy15

Fundraising18

National Presence22

Financial Stewardship24

Donor Recognition28

Leadership & Boards30

ONLINE

tourette.org

CONTACT

Tourette Association of America

42-40 Bell Boulevard, Suite 205 Bayside, NY 11361

PHONE

888-4touret

Contents

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awareness. Our phenomenal doctors and practitioners continue to amaze and inspire us with the breadth of their knowledge and deep commitment to the TS community.

If you haven’t had the opportunity to do so, please take advantage of the many resources, information and support that the Tourette Association has to o� er. We invite you to become part of the process — whether through a donation or by participating in a special event. Our work to make life better for all people a� ected by Tourette Syndrome and Tic Disorders is only made possible by the support of the communities we serve.

The Tourette Association of America is a cohesive network of professionals and volunteers working together to make life better for all people a� ected by Tourette Syndrome and Tic Disorders. As we refl ect on this year, we are both humbled to be leading this organization and working hard to make a di� erence.

Each year the TS community continues to inspire us with their outreach, dedication, and willingness to fi ght ignorance through education and advocacy, while helping us to raise money so we can continue touching lives. We truly couldn’t do it without you.

Gratefully,

It has been nothing short of an exceptional year for the Tourette Association of America. Looking back on all that has been accomplished, it’s hard to believe so much change could be possible in so little time. But that’s the beauty of our resilient community, and it’s the gift of your continued support. We cultivate strength from nurturing one another and from listening to each other’s stories. Our e� orts empower awareness and growth that can shift public perception and understanding.

A particular highlight was Tourette Syndrome Awareness Month reaching millions of people across the nation. We kicked o� our National Awareness Walk at Flushing Meadows Corona Park, where we witnessed an unprecedented number of attendees and once again surpassed our fundraising goal. Together, we also spearheaded an engaging social media campaign, #TAA45. We worked with so many incredible people who were willing to share their personal stories—their successes, failures, struggles, and victories. Stories of loneliness and confusion marked by hope and healing. This is what courage sounds like.

Working closely with the TAA leadership team and Board of Directors, we have identifi ed and developed new strategic priorities for the Association. These e� orts will continue into the new year, during which we will work to strengthen our operational capacity and infrastructure, increase programmatic impact and mission delivery, invest in our people, and foster even more connections to bolster organizational

WelcomeDear Friends,

President & CEO Chairman, Board of Directors

Amanda Talty Randi Zemsky

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Since 1972, we have set our sights on raising public awareness and fostering social acceptance to deal with the complexities of this disorder. Our

supportive community spans 32 Chapters and 81 Support Groups across the nation, providing help, hope, and public awareness to counter media stereotypes about Tourette Syndrome. We believe in educating medical and allied health professionals, educators, and the general public to better serve the needs of children, adults, and families a�ected by Tourette Syndrome and Tic Disorders. This includes o�ering resources and referrals to help individuals and their families to cope with any challenges that might arise.

Throughout the years, we have lobbied for state and national funding and advocated for public policies and services that promote positive school, work, and social environments. Our researchers continue to advance the scientific understanding of Tourette Syndrome leading to breakthroughs in new methods of diagnosis and treatment.

When we all work together, we can continue to educate and reduce stigma, and empower a supportive community across the nation.

Mission & HistoryThe Tourette Association of America (formerly known as the Tourette Syndrome Association) is the premier national non-profit organization working to make life better for all people a�ected by Tourette Syndrome and Tic Disorders.

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5,000Calls and emails have been responded to, providing hope, help and support.

reported gaining a deeper understanding of the condition and how to manage symptoms. The success of the online support groups resulted in outreach from hundreds of families for participation. Based on outreach and funding, the TAA will continue o�ering more online access and support across the nation.

To continue addressing the needs of the community, Tourette Association sta� members provided local Chapters, Support Groups, and Centers of Excellence across the nation with education resources and information about Tourette Syndrome including toolkits on how to navigate TS for medical professionals, families, and educators.

The TAA is comprised of 32 Chapters and 81 Support Groups, countless volunteers, Medical Advisory Board members, Scientific Advisory Board members, Education Advisory Board members, and the TAA Board of Directors.

secure $2 million annually for Tourette Syndrome and Tic Disorder initiatives. This funding has allowed the TAA to produce educational materials and facilitate programming to educators and support sta�, medical professionals, parents, and the general community at large. Since its inception, the CDC Tourette Health and Education Program (THEP) has delivered thousands of free educational opportunities (in-person and online) to over 400,000 health care providers, school personnel, families, individuals and members of the general public. For the first time ever, the CDC and TAA o�ered a piloted online support group program to a limited number of families and individuals. This piloted online support group series was designed to assist underserved areas without access to local TAA Chapters, Support Groups, or designated Centers of Excellence. The program was well-received and all participants

Each and every day we have the privilege of bringing to life

the three mission pillars of the Tourette Association of America: Awareness, Research, and Support. But we don’t do it alone. Thanks to individuals like you we are able to respond to over 5,000 calls and emails we get each year from individuals and families who feel lost in the face of a new and confusing diagnosis. Through our education and medical presentations, webinars, and exhibits we reached over 18,000 individuals across the nation. We have visited more than 75 cities to meet, educate, and work with our invaluable Chapter and Support Group leaders, engaged members, and donors. To date we have invested over $21 million dollars to facilitate new and cutting edge research into the causes and treatments for Tourette Syndrome. For the last fifteen years the TAA has partnered with the CDC (Centers for Disease Control and Prevention) to

Our Impact

18K Individuals who received TS education in the form of medical or educational presentations, webinars, Facebook Lives and exhibits across the nation.

451 Total TAA funded research projects across 16 counties.

150Prestigious healthcare institutions, universities, and organizations across the United States and overseas.

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HEALTH & EDUCATION

MEDICAL TRAINING

NATIONAL CONFERENCE

STAFF PRESENCE & TRAVEL

CENTERS OF EXCELLENCE

$21MAwarded since 2001 to facilitate new and cutting edge research into the causes and treatments for Tourette Syndrome.

75Cities visited to meet, educate, and work with our invaluable Chapter and Support Group leadership, community and donors.

16Medical institutions that are part of our Tourette Syndrome Centers of Excellence network across the nation that o� er the highest level of care, are undertaking groundbreaking research, are leaders in training and education and/or provide exceptional community outreach and advocacy.

CHILD OUTCOMES

Of children have felt discriminated against.

63%Of children have considered suicide or participated in self-harming behaviors.

32%Of children were forced to miss school or have extended absences.

40%

71%Of children were diagnosed within 2 years of symptoms. Most adults were diagnosed after 10+ years. TS awareness e� orts may be working but more is needed to decrease the time to diagnosis.

Impact Survey Disclaimer The Tourette Association of America (TAA) conducted a web-based survey about the impact that Tourette Syndrome and Tic

Disorders have on individuals and families. Approximately 1,000 responses were collected. Participants were required to be 18

years or older to take the survey. For those under 18, a parent or caregiver was required to fi ll out the survey on the child’s behalf.

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63%Struggle to cover high costs of services for their child such as counseling, appointments and tutoring.

34%Of parents report that they lost their job or they are not able to work as often due to increased caregiver duties of a child living with TS.

18%Are not able to a� ord medications and/or desired medical care for their child.

4%Of families were forced to move due to the fi nancial impact of TS.

FINANCIAL IMPACT

CHILDREN/FAMILY STATS

Of parents of children with TS reported that managing TS caused fi nancial problems for their family.

43%

83%Of children felt that TS negatively impacts their school experience and education.

Of children felt that the biggest challenge in managing TS was dealing with co-occurring conditions.

42%

Of parents noted their child having or having had an individualized educational plan (IEP) or 504 plan in place at their school.

69%

Impact SurveyLike many medical conditions, Tourette Syndrome can have a signifi cant impact on children and adults, as well as their families and friends. At the TAA, we work to strengthen the bonds of our community by acknowledging challenges to be overcome, and celebrating the successes that happen when we work together.

*The Financial Impact results represent a breakdown of the data reported in the Children/Family section.

Of adults take prescription medications to manage symptoms of TS.

51%

Of adults have tried 5 or more medications at some point in their life.

30%

Of adults do not feel that their symptoms are adequately controlled by existing medicine.

47%

ADULTMEDICATION USE

Of adults have felt discriminated against.

68%

Of adults have considered suicide or participated in self-harming behaviors.

51%

Of adults have found one of the biggest challenges is dealing with co-occurring psychiatric disorders and symptoms.

36%

ADULT OUTCOMES

Of children take prescription medications to manage symptoms of TS.

59%Of children have tried 5 or more medications at some point in their life.

29%Of parents do not feel that their child’s symptoms are adequately controlled by existing medicine.

44%

CHILDMEDICATION USE

Impact Survey Disclaimer The Tourette Association of America (TAA) conducted a web-based survey about the impact that Tourette Syndrome and Tic

Disorders have on individuals and families. Approximately 1,000 responses were collected. Participants were required to be 18

years or older to take the survey. For those under 18, a parent or caregiver was required to fi ll out the survey on the child’s behalf.

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Of families were forced to move due to the fi nancial impact of TS.

Of adults felt that managing TS caused fi nancial problems for their families.

15%

Of adults stated that TS prevented them from forming meaningful friendships or romantic relationships.

44%

25%Of adults have reported having issues with substance abuse.

Of adults noted that they have had to miss work or school due to their Tourette Syndrome or related conditions.

49%

Adults

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risk genes. The new genes identified from both of these studies (WWC1, CELSR3, NIPBL, and FN1) are thought to play unique roles in brain development and brain communication processes, opening up countless new avenues for experimental research targeted toward new treatments. Both of these studies were published in the prestigious scientific journal Neuron.

Brain Structure Changes Identified in Children with Tourette Syndrome

In a collaborative multicenter study published

in the journal Molecular Psychiatry this summer, doctors Bradley Schlaggar and Kevin Black from Washington University School of Medicine used structural magnetic resonance imaging (MRI) to compare 103 children and adolescents with Tourette Syndrome to a well-matched group of 103 children without tics. Children with Tourette Syndrome demonstrated lower white matter volume in the orbital and medial prefrontal cortex brain regions, and increased grey matter volume in other specific areas of the brain, namely the posterior thalamus, hypothalamus

2,400 individuals with Tourette Syndrome and 4,100 without to determine that individuals with Tourette were up to 20 times more likely to have abnormalities in these two genes.

In a second study, led by doctors Matthew State at the University of California San Francisco and Jay Tischfield of Rutgers University, 325 Tourette disorder parent-child groups from the Tourette International Collaborative Genetics cohort and a replication sample of 186 parent-child groups from the TAAICG identified four additional possible

TAA researchers discover new genes for the disorder, providing clues to underlying brain mechanisms

In breaking research published this spring, researchers from two major genetics consortiums identified new gene abnormalities linked to Tourette Syndrome. In one study, led by doctors Jeremiah Scharf at Massachusetts General Hospital for Children, Giovanni Coppola at the University of California Los Angeles, and Carol Mathews at the University of Florida, deletions of a gene called NRXN1 and duplications of a di�erent gene named CNTN6 were shown to substantially increase the risk of developing Tourette in some individuals. The Tourette Association of America International Consortium for Genetics (TAAICG) and its collaborators studied genetic material from over

Our Work

92% Of trainees either agreed or strongly agreed that their skill in diagnosing/recognizing patients has greatly improved as a result of this program.

98% Of trainees either agreed or strongly agreed that their skill in managing patients with TS has greatly improved as a result of this program.

Research

To date, the TAA has awarded $21 million to over 450 research projects across 16 countries. Every $1 of TAA grant funding has helped investigators obtain approximately $10 in grant funding from the National Institutes of Health (NIH). The scope of our work resonates beyond the United States to those a�ected globally. We continue to establish both national and international alliances, along with recognized experts, who can work together on shared goals to better treat and understand Tourette Syndrome.

The TAA Behavioral

Therapy Institute

organizes trainings

for providers on

CBIT.

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and midbrain. These brain regions are involved in various processes, including awareness of internal body sensations, which is important given the occurrence of premonitory sensations that precede tics in many patients.

Deep Brain Stimulation – A promising neurosurgical treatment

Deep Brain Stimulation or “DBS” is a procedure that utilizes an implantable electrode to alter the activity of brain circuitry. The procedure is FDA approved for Parkinson’s Disease, essential and dystonic tremors, OCD, and currently utilized for patients who have not responded to standard medical or behavioral therapy. To investigate the potential for DBS to benefi t Tourette Syndrome patients, the TAA sponsored the development of a registry, led by Doctor Michael Okun from the University of Florida and co-sponsored by Medtronic.

2017-2018 FUNDED GRANTS TO STUDY TOURETTE SYNDROME

The TAA’s grant awardees are tackling ways to improve treatment for Tourette Syndrome by testing brain surgical methods, mindfulness strategies, and methods to improve the success of behavioral interventions and enhance our structural understanding of brain changes that occur in the condition.

Kevin McCairn, PhDKyoto University, JapanInvestigating how brain chemicals are changed when vocal tics are expressed and how Deep Brain Stimulation (DBS) may help.

Michael Ullman, PhDGeorgetown University, Washington, D.C.Examining procedural memory, the brain, and clinical outcomes in children with Tourette Syndrome.

Hannah Reese, PhDBowdoin College, Brunswick, MEDeveloping a mindfulness-based intervention.

Joseph McGuire, PhDUniversity of California, Los Angeles, Los Angeles, CAIdentifying the neurocognitive profi le and brain structure changes of youth with TS who do and do not respond to behavior therapy.

Flint Espil, PhD* Stanford University, Stanford, CAExamining whether certain areas of the brain predict treatment response in youth with Persistent Tic Disorders.

Comprehensive Behavioral Intervention for Tics (CBIT)

Our community has witnessed a profound nationwide growth of trained medical professionals who provide treatment options and care for Tourette Syndrome and Tic Disorders. Many of these professionals are now certifi ed in CBIT, a behavioral treatment that helps patients become more self-aware of their tics and develop healthy behavioral practices to cope. Thanks to the TAA’s Behavioral Training Institute (BTI), 252 medical professionals across 15 cities in the United States and Canada are now successfully trained in CBIT.

The TAA remains committed to the widespread dissemination of CBIT through our BTI Program, led by Douglas Woods, PhD, and we will look to expand even further in the coming year. TAA BTIs are open to suitably qualifi ed and licensed health care professionals including physicians, psychologists, nurses, occupational therapists, social workers, and speech pathologists.

* Funded in partnership with the American Brain Foundation and the American Academy of Neurology

99%Of trainees felt their expectations were met by the program.

99%Of trainees would recommend this program to a colleague.

To learn more about CBIT for patients and practitioners visit tourette.org/CBIT.

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our own doctors didn’t seem to? I imagined him alone in a locked room, sobbing himself to sleep. How would that help him? I wanted to reach out to someone who could tell me what a parent—what I—was supposed to do in this situation, but they didn’t exist.

I thought of the mistakes I’d made before his diagnosis, remembered every time I’d begged, “please, just stop!”. I thought about the times he’d been removed from class, punished, and sent home. About how the adults in his life snapped at him in exasperation, thinking he was only making excuses when he cried and said it hurt to write or sit still. I thought of the battles over haircuts, meltdowns over showers, and the way he sobbed when we made him wear school shirts or socks with seams.

Of all the words in the English language, none come close to describing the feeling that took root in my heart the day I heard those words fall from my child’s lips. Here he was, only 7-years-old and already exhausted by his existence, overwhelmed by a body beyond his control and destroyed by the certainty that he was less than. Bad. Stupid. Here was my son telling me in the clearest words possible that he felt he had no value, that having Tourette Syndrome meant his future would never be equal to his peers. He was giving up.

“I want to die.”

I couldn’t stop picturing my son being committed, confi ned behind barriers I couldn’t cross. Would sta� in a facility like that understand Tourette? How could they possibly when

In that moment a list of failures ran through my mind like charges at a trial. Clearly I hadn’t lived up to my role as parent to a child with Tourette. And maybe, if I were honest, I just hadn’t loved him enough or the way I should have, because if I had my 7-year-old son wouldn’t be standing in the hallway, tears pouring down his blotchy face, confessing his desire to die.

“Mommy, I don’t want to live like this.”

With my throat feeling thick and my stomach churning, I called his doctor. Sharing our pain in that moment remains one of the toughest acts of my life. I know now that it was also the right thing to do. I know now that I was unable to give him what he needed because I simply didn’t know what that was.

“I’m going to kill myself. I don’t want to be alive any more.”

Tanya Sokol’s Story

“I was so lucky to fi nd the Tourette Association of America.”

It was their strength I leaned on, the care of their Centers of Excellence and the amazing web of volunteers who helped us survive from one day to the next. My son was one of the fortunate ones—eventually he was able to fi nd his way from despair to joy. The young man he has become is full of strength and resiliency; an incredible self-advocate, a successful student and a very happy (almost) adult with Tourette. I know that the TAA serves as a light for the countless other families currently struggling to fi nd their way in the dark.

Personal Story

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Awareness

At the TAA, our work is accomplished by the community working together to shift public perception and raise awareness. Meaningful and life-changing work comes from the collective e�orts of many.

1,896ResourcesHave been downloaded from the website and used to educate the general public, educators and medical professionals.

30Video VignettesCreated as educational, informational and conversational style videos to educate and raise awareness for TS.

2,234,146IndividualsVisited tourette.org for information and support.

Some of our most impactful initiatives are made through personal outreach and fostering

compassion via our social media campaigns. We’ve clocked in at nearly 76 million impressions for the year, and have rallied for heightened awareness and participation through hashtags such as #Rally4Tourette, #TouretteAwareness, #TAA45, and #Tourette. Social platforms can help shine a light on those who struggle with these conditions and illuminate a means for those who are a�ected to share their stories with the world.

We believe in the powerful role that multimedia can play in its ability to provide an empathetic window into the lives of others. Through video storytelling campaigns, we are encouraging those a�ected by Tourette Syndrome and Tic Disorders to feel supported by a greater network. On our YouTube channel Tourette TV, you can view more than 350 original videos for educators, medical professionals, and families living with Tourette Syndrome. In addition, you can watch PSAs, performances, award presentations

and speeches and other footage from various Tourette Association events, fundraisers and advocacy e�orts, as well as personal video stories from children and adults living with this spectrum of disorders. We’ve created several new CDC-funded educational and informational videos this year for parents, educators and medical professionals, along with 10 new Tourette Conversation videos.

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“What do I feel when I tic out?”

Jason Grant’s Story

My wife, Lori, who I’ve known for more than 10 years said recently that I have never discussed with her how it feels to “tic out”. What I actually feel, physically, when I shout out or when I grunt or when my face twitches. That’s what I am about to do. I’m now in uncharted territory.

“My tics are a strange and erratic phenomenon.”

It often starts with a thought or suggestion in my head telling me to do something and it won’t go away until I act on it; like a mosquito bite that needs to be scratched.

For instance, I might be walking down the street and I’ll see a pedestrian walking her dog. Seeing the dog, I immediately know that a dog barks, and the suggestion enters my head to bark like the dog. Obviously, I don’t want to give the dog’s owner the impression that I am teasing her pet or that I’m just plain crazy so I try to hold it in for a minute or two until she’s gone. That may or may not be very di¶cult to do depending on how I feel.

My attempt to hold back my tic is called “suppression,” and some people with TS can suppress longer than others, depending on the person. Many can hold it

in for hours, then go home and let it out for five or ten minutes like a balloon that bursts under pressure. Others can’t suppress more than a few minutes if at all.

Depending on how I am feeling that day, how calm or relaxed I am, I can hold it back then release. And sometimes if I don’t give a damn what people think of me, I might not even attempt to suppress at all and just bark as soon as I get the mental suggestion.

Once I get the right kind of a “tickle” in my throat from my barking, I can usually go about my business unless I get the suggestion to do it again. It all seems very arbitrary and maybe it is a little bit, but again, it all depends on how calm and relaxed I feel that day.

My tics and how they feel are not always the same for all TS su�erers.

“We are all di�erent.”

Personal Story

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32ChaptersProviding opportunities to develop and provide local programming and support systems.

450Youth AmbassadorsEducating their peers, adults, other educators, and government o¶cials.

$2MFundingContinued funding support for the nationwide CDC Tourette Syndrome and Tic Disorder initiatives.

81Support GroupsAcross 26 states provide emotional encouragement and information in group settings.

CDC and Public Policy E�orts

The Tourette Association and the Centers for Disease Control and Prevention (CDC) have had a powerful partnership for the past fifteen years. The TAA works each year to advocate for the funding of $2 million for the nationwide CDC Tourette Syndrome program, which supports the Tourette Health and Education Program (THEP). Through this program the TAA and the CDC have educated over 400,000 medical and allied health professionals about Tourette Syndrome and Tic Disorders, leading to faster, more accurate diagnoses and more appropriate treatment and care. This program

has also supported the development of educational resources and the education of teachers and administrators to better understand and meet the needs of our children whose school experiences, both socially and academically, have improved as a result. THEP has had tremendous impact on Tourette Syndrome awareness across the nation, improving how Tourette Syndrome is understood and reducing stigma. The continuation of this funding is an ongoing priority for the TAA. We are proud that we succeeded in maintaining our funding this past year and that we have significantly increased the number of Congressional supporters.

National Advocacy Day

A large part of our advocacy e�orts are led by Tourette Association of America Youth Ambassadors. Each year a new class of talented young people impacted by TS are trained to advocate in their schools and communities for their needs and the needs of others with TS. After the newly inducted class of Youth Ambassadors is trained, they attend National Advocacy Day where they have the opportunity to meet with their Representatives and Senators, as well as their legislative aides. They educate their elected o¶cials and, as constituents, ask for their support of the TAA’s initiatives. This fiscal year more than 120 young people

Public Policy

The Tourette Association of America (TAA) advocates for public policies that support the Tourette Syndrome and Tic Disorder community. We represent the interests of thousands of people across the nation who struggle with TS, Tic Disorders, and co-occurring conditions. We maintain continuous presence in Washington, D.C. where we lobby members of Congress, the White House, and numerous federal agencies who have the power to provide financial, political, and social support. A crucial part of advocacy is at the local level, state by state, district by district, community by community. The TAA is comprised of 32 Chapters and 81 Support Groups whose members work with their elected o¶cials to raise awareness about Tourette Syndrome and Tic Disorders.

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participated in 92 Congressional meetings. By advocating together our voices are amplified.

At this year’s National Advocacy Day, we were honored to award Senator Bob Casey (D-PA) and Congressman Leonard Lance (R-7-NJ) with Public Policy Awards for their continued and steadfast commitment to increasing Tourette Syndrome and Tic Disorder awareness.

The TAA has joined key councils and coalitions, where patient groups can benefit from the strength in numbers and together better educate Congress and the Administration on our needs and priorities. Our partner organizations include the National Health Council, Coalition for Health Funding, American Brain Coalition,

Consortium for Citizens with Disabilities, Movement Disorders Policy Coalition, The National Organization for Rare Disorders, Health IT Now Coalition, PACER, and Friends of the CDC National Center for Birth Defects and Developmental Disabilities. Congressional Briefings

This fiscal year, the Tourette Association of America held two highly successful and well attended Congressional Briefings on Capitol Hill. The first, on National Advocacy Day, was to share what it is like to live with Tourette Syndrome with Congressional sta� and Washington, D.C. stakeholders. The second was at our widely-attended Children’s Congressional Briefing on Tourette

Syndrome. The goal of this briefing was to discuss medical and scientific advances in Tourette Syndrome research and treatment. Dr. Carol Mathews of University of Florida College of Medicine, Dr. Kevin Black of Washington University School of Medicine, and Dr. Douglas Woods of Marquette University, respectively presented on their recent research findings regarding new genetic clues to understanding TS, brain structural di�erences in TS detected through collaborative brain imaging, and advances in Cognitive Behavioral Intervention for Tics (CBIT). All three doctors have dedicated their careers to Tourette Syndrome research and are key leaders in the field.

120 ParticipantsConsisting of Youth Ambassadors, parents and TAA sta� represented Tourette Syndrome on TAA’s National Advocacy Day in Washington, D.C.

92 Congressional MeetingsWere held with local representatives on National Advocacy Day to lobby for continued funding and support for Tourette Syndrome.

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really never talked about it (my choice). But no one else, at least not defi nitively. Letting it out wholesale was one of the best decisions I’ve ever made.

I started the Tourette’s Podcast in early 2018 after my brain asked me a couple straightforward questions: What’s the worst that could happen if you stop hiding? and how’s everyone else in the Tourette world doing?

“It just hadn’t occurred to me in my adult life that I could talk to other people with Tourette Syndrome and learn from them.”

How to self-accept, how to explain TS to coworkers, how to handle this-and-that. But it also didn’t occur to me that so many fellow Touretters were in the same hiding places as me, not confi dent enough to come out per fear of ridicule or derailment, and that the simple act of talking or fl at-out venting to one another could go a long way. For me, anyway.

If I was going to lead a successful life socially and professionally, Tourette Syndrome would not be in the conversation. I was so certain that if anyone important (colleagues, bosses.... girls) knew I had TS, the misunderstanding and diminishment of my capabilities would blow all of my chances.

That line of thinking began when I was roughly 11-years-old, in middle school, when establishing your “cool” took a lot of hard work and one little snag — like tripping down the stairs, spilling soda on your pants or, god forbid, an episode of uncontrollable sounds and movements — could set you back years, if not eternally. Which is why I kept a lid on my TS and crafted ways to mask my tics or blend them into normal routines, even as the subterfuge could be exhausting and often unsuccessful. As of this writing, I’m 38, and it wasn’t until earlier this year that I opened up about my Tourette’s.

Yeah, my amazingly supportive fi ancé already knew, and obviously my family knew. My closest friend knew, too, though we

So I started a Twitter account, called it @tourettespod, and messaged people with “Tourette” in their bio to ask whether they’d be interested in recording a conversation about their experiences for a weekly TS podcast. I was certain I’d get just a few yesses, if any, and that it would go nowhere better than a nice but brief exercise of talking and connecting. Quickly, though, I had a long list of people — both closeted about their tics or wide-open about them —waiting to be interviewed. The energy for awareness and undoing that terrible feeling of isolation was huge. Plus, it was a podcast — a relaxed, pressure-free medium for talking about virtually anything.

On each episode, I talk with someone somewhere else in the world (as far away as Australia, so far) about their background, their careers, their diagnoses, choices to medicate or not, whether they’re open about TS, how they’ve handled awkward public situations, their creative interests and everything else that could pass through the lens of Tourette’s. Since I have Tourette Syndrome, guests

What’s the worst that could happen if you stop hiding?

Ben Brown’s Story

know they can talk freely without worry that they’re wandering into a producer’s sensationalist trap. “By Touretters, for Touretters,” I guess. And I love that I’m the underling of the show, taking notes and learning from the people I get to talk to. Every single episode has helped my life.

“I now feel way less isolated and fully proud of my TS.”

Thanks to the dozens of people I’ve interviewed to date, I now feel way less isolated and fully proud of my TS. What’s better is I receive a lot of email from listeners saying the same, just through listening to people share stories that are startlingly similar to their own. A good number of people have told me they’re publicly embracing their tics and comorbidities for the fi rst time ever. And it’s not because of the podcast. It’s how all of these pieces fi t together. I’m just glad I wised up enough to accept myself as it happens.

Personal Story

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Team Tourette

Golf Outing

$146,907 6,688,735Individuals who participated in a Team Tourette event across the nation.

708Total Team Tourette steps taken in support of the mission, making a di�erence with every mile.

Raised by participants and sponsorships through our Team Tourette fundraising initiatives.

Fundraising

We are grateful to the countless number of people who support our national fundraising events throughout the year. Events hosted by the Tourette Association of America are designed to engage the community, raise money, support essential programming, and fulfill our mission of making life better for all people impacted by Tourette Syndrome and Tic Disorders. In 2017 we saw growth in participation and funds raised through our Gala honoring Ken Moelis, the Illinois Golf Classic and Dinner & Ladies’ Game Day, and the National Walk.

The 2017 Illinois Golf Classic and Dinner & Ladies’ Game Day was held on Monday, June 19. The event brought out more than 250 individuals, raising over $140,000.

19


November 6, 2017

honoring Ken Moelis

The Tourette Association of America Celebration Gala was on Monday, November 6 at Capitale in the Bowery, NYC and was a tremendous success. In celebration of 45 years as an organization, the evening raised over $3.4 million in support of the Tourette Association of America. Honored at the Gala was investment banker Ken Moelis, Founder, Chairman and Chief Executive O¶cer of Moelis & Company. The night featured special guests including Anthony Ervin, USA Olympic swimmer and four-time medalist, and Sheila Nevins, Former President of HBO Documentary Films and author of You Don’t Look Your Age and Other Fairytales. Sheila with her son David Koch, TAA Board Member, read a passage to Gala attendees from her book reflecting on their experience with Tourette Syndrome.

Galaraised over

$3.4 millionin support of TAA

20


Fast forward to a year later, when I was 7-years-old. I received my diagnosis of Tourette Syndrome and my body has never truly been “mine” ever since. You would think that would make this a sad story, but that’s not the case at all. Although some days end

I remember the fi rst time I noticed my tics like it was yesterday. I remember being a little scared—having this weird urge to contract my stomach muscles. I remember thinking if I just did it, it would go away and I’d be fi ne... but that was not the case.

Britney Wolf’s Story

in exhaustion and a lot of tears, most days are pretty good, tics and all.

Growing up with Tourette Syndrome has had its ups and downs. I had days that I had to come home from school because it became too much. I remember crying to my mom while thinking

“I just want to stop moving for two seconds, is that too much to ask?”

Those thoughts have re-entered my mind on the bad days. But my family, friends, and my husband have helped me get by. My parents are the reason for my positive outlook and for the confi dence I have in myself, even with my tics. They taught me that I was just as strong and just as good as everyone else and if anything that growing up with Tourette Syndrome made me that much stronger. It made me a little di� erent, but it didn’t mean I wasn’t capable of absolutely anything.

I am normal, for whatever normal may be. I have a full-time job in an o¶ ce setting and I’m even a part-time personal trainer and fi tness instructor. Exercise has become a passion of mine and it has helped me manage my

Tourette Syndrome over the years. I found that when I exercise, my tics disappear and the e� ect lasts throughout the day. I found ways to help myself and most importantly, I found a way to take control back even if for just an hour or two.

I am fi ercely proud and love the person I have become and, most importantly, unashamed of my Tourettes. Having Tourette Syndrome isn’t easy; I hate when my emotions, even happy ones, put my tics into overdrive. People staring isn’t always easy to deal with either but, it’s who I am and there is nothing I can do to change it. The way I see it is, if I don’t accept it, how can I ever expect anyone else to do the same? Yeah, my body does weird things, I make weird noises that often sound like a squirrel, but that’s okay because it’s me.

TS is a huge part of my life and who I am, but that’s not ALL that I am.

“It made me strong, independent, and empathetic.”

And although I’d love to wake up tomorrow and never tic again, there will NEVER be a day where I wish I never had it to begin with.

Personal Story

21

22


*Tourette Association of America Center of Excellence **Mid-Atlantic Chapter

Alabama Support Group

University of Alabama at Birmingham, Birmingham, AL*

Arizona Chapter

Northern California & Hawaii Chapter

Southern California Chapter

University of California, Los Angeles, Los Angeles, CA*

Rocky Mountain/Denver Support Group

Connecticut Chapter

Yale Child Study, New Haven, CT*

Delaware Chapter

Florida Chapter

University of Florida, Gainesville, FL*

University of South Florida, St. Petersburg, FL*

Emory University School of Medicine, Atlanta, GA*

Georgia – Northwest Atlanta Support Group

Idaho Falls Area Support Group

Illinois Chapter

Indiana Chapter

Iowa Support Group

NE Iowa Support Group

Kentucky Support Group

Louisville Support Group

Maryland Chapter**

Johns Hopkins Hospital, Baltimore, MD*

Massachusetts Chapter

Massachusetts General Hospital, Boston, MA*

Minnesota Chapter

Northern Mississippi Support Group

Missouri Chapter

Children’s Mercy Hospital, Kansas City, MO*

New Jersey Chapter

New York City Chapter

New York – Greater Rochester Chapter/ Fingerlakes Area

National PresenceThe Tourette Association of America is comprised of 32 Chapters and 81 Support Groups across the nation. In addition to local support, the TAA Centers of Excellence (CofE) program recognizes medical institutions that o�er the highest level of care, are undertaking groundbreaking research, are leaders in training and education and/or provide exceptional community outreach and advocacy for Tourette Syndrome and other Tic Disorders.

23


New York – Greater NY State Chapter

New York – Hudson Valley Chapter

Icahn School of Medicine at Mount Sinai, New York, NY*

New York – Long Island Chapter

Long Island Center for Tourette and Associated Disorders, Manhasset, NY*

University of Rochester Medical Center, Rochester, NY*

Weill Cornell Medical College, New York, NY*

New Mexico Chapter

Greater Carolinas Support Group

Coastal North Carolina Support Group

North Carolina Wake County, Raleigh Area Support Group

North Dakota Support Group

Oklahoma Chapter

Eastern Pennsylvania Chapter

Western Pennsylvania Chapter

Puerto Rico Support Group

Palmetto Health – USC Medical Group, Columbia, SC*

Mid-Tennessee Support Group

Texas Chapter

Baylor College of Medicine, Houston Texas*

Utah Chapter

University of Utah, Salt Lake City, UT*

Vermont Support Group

Virginia Chapter**

Washington D.C. Chapter**

Washington/Oregon Support Group

Wisconsin Chapter

YOUR TAA DOLLARS AT WORKBASED ON AUDITED FINANCIALS FOR FISCAL YEAR ENDED

FEBRUARY 28, 2018

2018

OVERVIEWTotal revenueTotal expensesOverall surplus

Program Public Education $ 1,398,241 Professional Education 56,690 Centers for Disease Control (THEP) Program 861,298 Research 1,636,994 Total Program 3,953,223

Administrative Management & General 667,254 Fundraising 648,492 Total Administrative 1,315,746

TOTAL EXPENSES $ 5,268,969

$ 6,986,554(5,268,969)

1,717,585

EXPENSE

YOUR TAA DOLLARS AT WORKBASED ON AUDITED FINANCIALS FOR FISCAL YEAR ENDED

FEBRUARY 28, 2018

2018

OVERVIEWTotal revenueTotal expensesOverall surplus

Program Public Education $ 1,398,241 Professional Education 56,690 Centers for Disease Control (THEP) Program 861,298 Research 1,636,994 Total Program 3,953,223

Administrative Management & General 667,254 Fundraising 648,492 Total Administrative 1,315,746

TOTAL EXPENSES $ 5,268,969

$ 6,986,554(5,268,969)

1,717,585

EXPENSE

EXPENSE BREAKDOWN

PROGRAM RATIO 75/25

Fundraising12%

Research31%

Management & General

13%

Public Education

27%

ProfessionalEducation

1%

Centers for Disease Control (THEP)

16%

24


Financial Stewardship

TOURETTE ASSOCIATION OF AM ERICA INC.STATEM ENTS OF FINANCIAL POSITION

AS OF FEBRUARY 28, 2018 AND 2017

2018 2017ASSETS

284,594,1 stnelaviuqe hsac dna hsaC $ 2,381,638$547,06396,08elbaviecer stnarG 947,692881,746,1 ten ,elbaviecer snoitubirtnoC 694,297,7440,317,8 stnemtsevnI

000,623detcirtser yltnenamrep - stnemtsevnI 326,000381,122912,942 stessa rehto dna sesnepxe diaperP

633,32 ten ,tnempiuqe dna ytreporP 25,335

TOTAL ASSETS 12,534,962$ 11,104,146$

LIABILITIES918,682sesnepxe deurcca dna elbayap stnuoccA $ 435,747$

355,728412,106 elbayap stnarg hcraeseR 840,441eunever derrefeD 055,55

TOTAL LIABILITIES 1,032,081 1,318,850

COM M ITM ENTS AND CONTING ENCIES

NET ASSETS U nrestricted 9,424,547 9,126,486

018,233433,257,1 detcirtser yliraropmeT 000,623detcirtser yltnenamreP 326,000

TOTAL NET ASSETS 11,502,881 692,587,9

S 12,534,962$ 11,104,146$ TOTAL LIABILITIES AND NET ASSET

25


TOURETTE ASSOCIATION OF AMERICA INC. STATEMENTS OF ACTIVITIES

FOR THE YEARS ENDED FEBRUARY 28, 2018 AND 2017

For the Year Ended February 28, 2018 For the Year Ended February 28, 2017

Temporarily Permanently Total Temporarily Permanently Total Unrestricted Restricted Restricted 2018 Unrestricted Restricted Restricted 2017

SUPPORT AND REVENUE: Public Support: `

Fund raising events revenue $ 5,894,893 $ - $ - $ 5,894,893 $ 1,797,736 $ - $ - $ 1,797,736 Less: direct benefits to donors (Note 2K) (3,577,726) - - (3,577,726) (714,182) - - (714,182) Net fundraising events revenue 2,317,167 - - 2,317,167 1,083,554 - - 1,083,554

Grants, contributions and bequests (Notes 2F, 2J, and 5) 994,337 2,230,008 - 3,224,345 628,003 540,050 - 1,168,053 Membership dues 73,521 - - 73,521 94,728 - - 94,728

Total Public Support 3,385,025 2,230,008 - 5,615,033 1,806,285 540,050 - 2,346,335

Government Support:

C.D.C. grant 861,296 - - 861,296 907,820 - - 907,820 Total Government Support 861,296 - - 861,296 907,820 - - 907,820

Revenue:

Investment activity (Note 3) 450,604 6,521 - 457,125 874,915 5,989 - 880,904 Sales - emblems, audio visuals and publications - - - - 419 - - 419 Conference income 53,100 - - 53,100 163,663 - - 163,663

Total Revenue 503,704 6,521 - 510,225 1,038,997 5,989 - 1,044,986

Net assets released from restrictions (Notes 2B and 10) 817,005 (817,005) - - 694,045 (694,045) - -

TOTAL SUPPORT AND REVENUE 5,567,030 1,419,524 - 6,986,554 4,447,147 (148,006) - 4,299,141

EXPENSES: Program services 3,953,223 - - 3,953,223 4,540,450 - - 4,540,450 Management and general 667,254 - - 667,254 688,774 - - 688,774 Fundraising 648,492 - - 648,492 926,666 - - 926,666

TOTAL EXPENSES 5,268,969 - - 5,268,969 6,155,890 ---------------------------------------------------------------- 6,155,890

CHANGE IN NET ASSETS (Note 13) 298,061 1,419,524 - 1,717,585 (1,708,743) (148,006) - (1,856,749)

Net assets - beginning of year 9,126,486 332,810 326,000 9,785,296 10,835,229 480,816 326,000 11,642,045

NET ASSETS - END OF YEAR $ 9,424,547 $ 1,752,334 $ 326,000 $ 11,502,881 $ 9,126,486 $ 332,810 $ 326,000 $ 9,785,296

The accompanying notes are an integral part of these financial statements. - 3 -

TOURETTE ASSOCIATION OF AM ERICA INC.STATEM ENTS OF ACTIVITIES

FOR TH E YEARS ENDED FEBRUARY 28, 2018 AND 2017

latoT2017

:EUNEVER DNA TROPPUS Pu b lic Su p p ort:

eunever stneve gnisiar dnuF 1,797,736$ L ess: direct benefits to donors (714,182)

eunever stneve gnisiardnuf teN 1,083,554

Grants, contributions and beq uests 1,168,053 seud pihsrebmeM 94,728

Total Pu b lic Su p p ort - 2,346,335

G overnment Su p p ort: C. D. C. grant 907,820 Total G overnment Su p p ort 907,820

Revenu e:ytivitca tnemtsevnI - 880,904

snoitacilbup dna slausiv oidua ,smelbme - selaS 419 Conference income 163,663 Total Revenu e 1,044,986

Net assets released f rom restric tions - -

TOTAL SUPPORT AND REVENUE - 4,299,141

EXPENSES:secivres margorP 4,540,450

lareneg dna tnemeganaM 688,774 gnisiardnuF 926,666

TOTAL EXPENSES 6,155,890

CH ANG E IN NET ASSETS - (1,856,749)

raey fo gninnigeb - stessa teN 11,642,045

NET ASSETS - END OF YEAR 9,785,296$

7102 ,82 yraurbeF dednE raeY eht roF8102 ,82 yraurbeF dednE raeY eht roFlatoT

2018

5,894,893$

(3,577,726) 2,317,167

3,224,345 73,521 5,615,033

861,296 861,296

457,125 -

53,100 510,225

-

6,986,554

3,953,223 667,254

648,492

5,268,969

1,717,585

9,785,296

11,502,881$

26


TOURETTE ASSOCIATION OF AMERICA INC. STATEMENTS OF ACTIVITIES

FOR THE YEARS ENDED FEBRUARY 28, 2018 AND 2017

For the Year Ended February 28, 2018 For the Year Ended February 28, 2017

Temporarily Permanently Total Temporarily Permanently Total Unrestricted Restricted Restricted 2018 Unrestricted Restricted Restricted 2017

SUPPORT AND REVENUE: Public Support: `

Fund raising events revenue $ 5,894,893 $ - $ - $ 5,894,893 $ 1,797,736 $ - $ - $ 1,797,736 Less: direct benefits to donors (Note 2K) (3,577,726) - - (3,577,726) (714,182) - - (714,182) Net fundraising events revenue 2,317,167 - - 2,317,167 1,083,554 - - 1,083,554

Grants, contributions and bequests (Notes 2F, 2J, and 5) 994,337 2,230,008 - 3,224,345 628,003 540,050 - 1,168,053 Membership dues 73,521 - - 73,521 94,728 - - 94,728

Total Public Support 3,385,025 2,230,008 - 5,615,033 1,806,285 540,050 - 2,346,335

Government Support:

C.D.C. grant 861,296 - - 861,296 907,820 - - 907,820 Total Government Support 861,296 - - 861,296 907,820 - - 907,820

Revenue:

Investment activity (Note 3) 450,604 6,521 - 457,125 874,915 5,989 - 880,904 Sales - emblems, audio visuals and publications - - - - 419 - - 419 Conference income 53,100 - - 53,100 163,663 - - 163,663

Total Revenue 503,704 6,521 - 510,225 1,038,997 5,989 - 1,044,986

Net assets released from restrictions (Notes 2B and 10) 817,005 (817,005) - - 694,045 (694,045) - -

TOTAL SUPPORT AND REVENUE 5,567,030 1,419,524 - 6,986,554 4,447,147 (148,006) - 4,299,141

EXPENSES: Program services 3,953,223 - - 3,953,223 4,540,450 - - 4,540,450 Management and general 667,254 - - 667,254 688,774 - - 688,774 Fundraising 648,492 - - 648,492 926,666 - - 926,666

TOTAL EXPENSES 5,268,969 - - 5,268,969 6,155,890 ---------------------------------------------------------------- 6,155,890

CHANGE IN NET ASSETS (Note 13) 298,061 1,419,524 - 1,717,585 (1,708,743) (148,006) - (1,856,749)

Net assets - beginning of year 9,126,486 332,810 326,000 9,785,296 10,835,229 480,816 326,000 11,642,045

NET ASSETS - END OF YEAR $ 9,424,547 $ 1,752,334 $ 326,000 $ 11,502,881 $ 9,126,486 $ 332,810 $ 326,000 $ 9,785,296

The accompanying notes are an integral part of these financial statements. - 3 -

TOURETTE ASSOCIATION OF AM ERICA INC.STATEM ENTS OF ACTIVITIES

FOR TH E YEARS ENDED FEBRUARY 28, 2018 AND 2017

latoT2017

:EUNEVER DNA TROPPUS Pu b lic Su p p ort:

eunever stneve gnisiar dnuF 1,797,736$ L ess: direct benefits to donors (714,182)

eunever stneve gnisiardnuf teN 1,083,554

Grants, contributions and beq uests 1,168,053 seud pihsrebmeM 94,728

Total Pu b lic Su p p ort - 2,346,335

G overnment Su p p ort: C. D. C. grant 907,820 Total G overnment Su p p ort 907,820

Revenu e:ytivitca tnemtsevnI - 880,904

snoitacilbup dna slausiv oidua ,smelbme - selaS 419 Conference income 163,663 Total Revenu e 1,044,986

Net assets released f rom restric tions - -

TOTAL SUPPORT AND REVENUE - 4,299,141

EXPENSES:secivres margorP 4,540,450

lareneg dna tnemeganaM 688,774 gnisiardnuF 926,666

TOTAL EXPENSES 6,155,890

CH ANG E IN NET ASSETS - (1,856,749)

raey fo gninnigeb - stessa teN 11,642,045

NET ASSETS - END OF YEAR 9,785,296$

7102 ,82 yraurbeF dednE raeY eht roF8102 ,82 yraurbeF dednE raeY eht roFlatoT

2018

5,894,893$

(3,577,726) 2,317,167

3,224,345 73,521 5,615,033

861,296 861,296

457,125 -

53,100 510,225

-

6,986,554

3,953,223 667,254

648,492

5,268,969

1,717,585

9,785,296

11,502,881$

27


National EventsNational Awareness 5K Run/WalkSunday, May 19, 2019Flushing, New York

Golf Classic & Dinner and Ladies’ Game DayMonday, June 24, 2019Lincolnwood, Illinois

New York City MarathonSunday, November 3, 2019New York, New York

Tourette Association GalaMonday, November 18, 2019New York, New York

National ConferenceMay 14 – May 17, 2020Minneapolis, Minnesota

28


What we do would not be possible without the help of so many generous supporters and members of the community. Your hard work and sacrifice has brought immeasurable light and happiness into the lives of others, and for this we thank you.

Donor Recognition

$1,000,000 + Ken & Julie Moelis $100,000 +Sidney Dubrow TrustDarryl & Diane MallahNeurocrine BiosciencesThe Ochsman Foundation Inc.Alisa Ya�a & Ken McElvain Family Philanthropic Fund

$50,000 - $99,999Coulter Enterprises Inc.Consolidated Press Holdings LimitedWachtell, Lipton, Rosen & Katz $25,000 - $49,999Abide Therapeutics, Inc.Astoria BankAT&TMark and Debbie AttanasioBharti Airtel USA LtdJoseph CampoloCanyon Partners LLCCBS CorporationChoice Hotels FoundationLawrence and Emily Chu FoundationThe Crain Breckenridge Family FundJoseph & Kelly DePauloPaul DevoreEric DiamondClaire Friedlander Family FoundationFogelman Family TrustFoundation for the Greatest GoodAdrian GoodismanThomas & Holly GoresGUESS FoundationHamilton E. James Family Fund

Michael HooksInvestors FoundationJohnson & JohnsonThe Karsh Family FoundationPatrick P. Lee FoundationSheila Nevins & Sidney KochRichard & Cynthia LeamanMacKenzie Partners, Inc.Navid & Joanne MahmoodzadeganMetLifeRonald & Kerry Moelis Family FoundationMotulsky Family FoundationNelson & Claudia Peltz Family FoundationOmnicom Management, Inc.The Perelman Family Foundation Inc.Stephen & Maureen QuillJe�rey RaichBenoit RenonResnick Family Foundation, Inc.Ressler/Gertz Family FoundationAnton SahazizianSilicon Valley Community FoundationRobin & David SmallStandard IndustriesStonehill Capital Management, LLCStuart SubotnickSullivan & Cromwell, LLPThe Travelers Companies, Inc.Eddie TrumpStuart & Jane WeitzmanRandi Zemsky & Bob Lane $10,000 - $24,999 AmbacFrank J. Antun FoundationApollo Global Management LLC

Assured Guaranty Corp.Barron Development LLCJohn & Donna BartoBessemer TrustArt & Dahlia BilgerFrederick CookDentons US LLPJared DermontThomas H. & Jeanne GnuseGoldman, Sachs & Co.Gri�on CorporationRodgers & Nancy HarperMark & Deborah HenkelsPeter Hollenbeck, PhDMark & Joyce JansenDan & Tamara KilmurrayKissick Family FoundationPatrick Loftus-HillsSheldon & Sandra MallahMedtronicGaye Gross Moelis FundJohn MomtazeeThe Garrett and Mary Moran Family FoundationMussafer Family FundNew York Yankees FoundationStephanie & Peter Nolan Foundation Ressler Family FoundationMarc J. RowanYadin RozoDavid & Karen SachsSandler O’Neill & Partners, L.P.Jerry & Linda SaslowAugusto SassoRobert & Rovena SchirlingZack SchnollSkadden, Arps, Slate, Meagher & Flom LLPJonathan and Sheryl Sokolo�Leon & Leesa WagnerHelene Walisever & Steve Berkson

Warren WooJay Zises $5,000 - $9,999 Abrams CapitalDwight & Ingrid AlpernBradley & Carol AsnessLouis & Julie BucksbaumBrian & Carol CallaciMilton CarrollCigna FoundationSusan Courey, Ph.D. & Mark DS. Courey, M.D.Charlie & Bobbie DenisonRobert GoldGulf Coast Community FoundationGary JonesRoss KemperBrad & Cindy KurtzLeslie Fund, Inc.Vincent & Beth LimaDave MahoneyBarry & Sheryl MallahLloyd & Marnie MallahTed MathasJohn & Teresa McAllisterMilken Family FoundationNelson Family FoundationStuart & Marcy NewbergerNew York Community Bank FoundationOtsuka PharmaceuticalDominick & Ellen PetrosinoPfizer, Inc.Peter & Merryl SilberlichtJane SmolikSquar MilnerTEVA PharmaceuticalsThe Cheshire GroupKenneth & Amy ViellieuTodd & Britten WadlerOsamu WatanabeWinnick Family Foundation, Inc.XL Catlin

29


$1,000 - $4,999Mark & Patricia AdlerJe�rey AederErick AlbertiKendra AlianoAmerican FundsJames & Kathy AmesAnonymousRhonda Ashino�Jennifer BaileyJoe & Judy BaldwinBayside Business Association, Inc.Dana BeaverRobert & Gail BedoukianLeon BeharBel Air Investment Advisors LLCRobert & Robin BermanDilip Bhatt, MDFrank Joseph BiondiRobert & Lenore BirnbaumDavid BondermanGabriel & Deborah BrenerDavid Brickler David BrownStephen BrownChristine BrykowytchDonna BurickRobert CalnonCapital Credit UnionThane & Jennifer CarlsonCharitable Adult Rides & Services, Inc.Peter & Kate CiafoneKevin CoganAndrew ColeJohn ColellaChristine Contardi StoneJohn CostasRobert CrowleyCRM Properties Group LtdMichel & Susan D. Corp.Mary DanzigMaarten de JongLois DelucaThe Derrough FundNathaniel DeutschDime Community BankMike DiYanniR. DonoghueWilliam DraperPatrick DunleavyDavid DwyerAnthony EarleyErika FalkDavid Faris

David FentonTimothy FitzsimmonsRobert FlachsKerry FleischmanSeymour FlugFlushing BankMark & Jill FreemanJordan FriedmanG.A. Paving Construction, Inc.Todd GardellaPhilip GeorgeRachel GibbonsStuart GoldsteinRichard GoodmanJames GracerJohn GradyMH Gra� & Associates, Inc.Harley GreenfieldOtavio GuazzelliDavid GubbayAndrew HaberSusan HaggertyKenneth HalabyCharlotte HaleWilliam HarnischDavid HellerJohn HeymanWilliam HeymanJanet HigginsRamy IbrahimScott IsraelJohn JamesJK Group Inc.Michael & Mari Johnson Charitable FoundationRobin JosephsJ.T. PlumbingRudolf KatsMark KellerMark KermanKeith KetelsenHedi KieselsteinMarcie KirkpatrickChristopher KirstenRichard KleinmanDavid KochThe William & Shelia Konar FoundationHoward KristolAlan KubanLawrence KwonAdam LabkonScott LadanyCharles LadenheimSteven LebowJulie Lerner Levine

Howard & Elayne LeshtzEllen LevittSheree LinkerMark LissThe Margaret & Daniel Loeb FoundationCathy LouchheimJon LundyAdam MallahEvan MallahBarbara ManilowMarc Realty, LLCStephen MassadJ. Stephen McNallyMeritage HomesMidwest Industrial MetalsCheryl MitchellStefanie MittmanHerbert MoelisMoldman USAMichael MontuoriMuch Shelist. P.C.Municipal Credit UnionGlenn MuscoskyJohn NeichterMarc NewmanNFPOld Oaks Foundation, Inc.Richard OrdersAlonna OstadPenny OwingsPartners Financial Charitable FoundationPaul PavaoMartin PerezBruce PieletPink Tie 1000 FoundationPeter PritchardPritzker Traubert FoundationDavid PursellQuantum Foundation Inc.Terry ReardonJohn ReynaRobert Wood Johnson FoundationLeslie RotureauAlan RothenbergChris RyanNicholas SaggeseJorio Salgado-GamaMoshe SassoverKent SavagianNeal SchneiderKatherine SchneiderDavid SchwartzFrank Segall

Richard SeligmanSteve SerckRobert SharonSanam SheikhJune ShillDiane ShropshireSigma Sigma Sigma-ChiHoward SilbersteinJoseph SimonLinda SingerJohn SippJerry SkurnickDina SmithGreg StarkinsJonathan SternDavid StudenmundShih-Ping SunSteven SwidlerStephen Ta�etIna Ta�etSidney TaurelDianna TesauroThe Laubacher CompanyThe Mint Julep Boutique LLCThe New York Community TrustKaren TolmichLewis TopperPaul TosettiChris Toshe�Michael TrainoTrinity Heating and AirTurner ConstructionBlaise UratoLeon VahnRudy ValnerVan Horn & Friedman, P.C.Jennifer VargasJennifer VitielloRobin VorelVulcan Global Manufacturing SolutionsAndrea WachterCraig WadlerRick WeinsteinMindy WeissKara WillisRebecca WisherBradley WissRoger WoodArthur ZeizelRichard ZellmerDon ZietlowArthur ZuckermanHoward & Jane Zwilling

We are grateful for the continued support of all our Donors. For a complete listing, please visit our online 2017 Annual Report. We have made every e�ort to ensure the accuracy of our listings. We apologize for any errors which may appear.

The Tourette Association of America’s team is comprised of compassionate, hardworking individuals dedicated to making life better for all people impacted by Tourette Syndrome and Tic Disorders. For a complete listing of TAA sta� members, visit tourette.org/sta� .

30


VP, Resource Development & Chapter Services

VP, Public Policy

VP, Finance & Administration

Executive AdministratorVP, Research & Medical Programs

President and CEOAmanda Talty Tracey Costikyan Alexander Diana Felner

Sonja Mason-Vidal, MBA Susan YoungDiana Shineman, PhD

Leadership & Boards

31

Board of Directors

Randi ZemskyBoard Chair

Stephen BarronFirst Vice Chair

Cindy KurtzSecond Vice Chair; Chapter Services Committee Chair

Paul DevoreThird Vice Chair

Peter Hollenbeck, PhD Fourth Vice Chair

Fred CookDr. Azad AnandReid Ashino�Susan Courey, PhDCheri David, C.P.A.Alice KaneDavid KochJe�rey KramerStephen McCall, M.Ed.Julie MoelisBruce OschmanChris OvitzMonte RedmanRovena SchirlingDavid SchoenhaarJohn Walkup, M.D.

Advisory Boards

Education Advisory

Kathleen Giordano, BSChair Colleen R. Beaudoin, M. Ed.Amanda Co�man, MSMargery Henning, MS OTR/LBrian Lane, MA, Ed.Pam Malley, MA, CCC-SLPEllen Meyers, MS, M. Ed.Jen Stenger, PhDHelene Walisever, PhDWendy Wegman, MA, Ed.

Medical Advisory

Barbara Co�ey, M.D. MSCo-Chair Keith Co�man, M.D.Co-Chair Shannon Bennett, PhDMichael Himle, PhDJoohi Jimenez-Shahed, M.D.Monica Jones, M.D.Rebecca Lehman, M.D.Irene Malaty, M.D.Kirsten Mueller-Vahl, M.D.Erika Nurmi, M.D., PhDMichael Okun, M.D.Anthony Rostain, M.D., M.A.

Jan Rowe, Dr. OT, OTR/L, FAOTASabine Wilhelm, M.D.Douglas Woods, PhD

Scientific Advisory

Carol Mathews, M.D.Co-Chair

Aryn Gittis, PhDCo-Chair Scott Compton, PhDMichelle E. Ehrlich, M.D.Donald Gilbert, M.D., MS, FAAN, FAAPH. A. (Buz) Jinnah, M.D., PhDTanya Murphy, M.D.David A. Peterson, PhDRosalinda Roberts, PhDJeremiah Scharf, M.D., PhDBradley L. Schlaggar, M.D., PhDMarc F. Schmidt, PhDKim Seroogy, PhDKristina Simonyan, M.D., PhD

tourette.org

Tourette Association of America

42-40 Bell Boulevard, Suite 205 Bayside, NY 11361

Documents

Tourette Association of America - Amazon S3 · Tourette Syndrome and Tic Disorders is only made possible by the support of the communities we serve. The Tourette Association of America