PLATINUM2024

International OCD Foundation, Inc. HQ

Research, Resources, Respect

Boston, MA   |  www.iocdf.org

Mission

The mission of the IOCDF is to ensure that no one affected by OCD and related disorders suffers alone. Our community provides help, healing, and hope. Our vision is that everyone impacted by OCD and related disorders has immediate access to effective treatment and support. The IOCDF provides up-to-date education and resources, strengthens community engagement, delivers quality professional training, and advances groundbreaking research.

Ruling year info

1992

Executive Director

Rebecca Deusser

Main address

P.O. Box 961029

Boston, MA 02196 USA

Show more contact info

Formerly known as

Obsessive Compulsive Foundation, Inc.

EIN

22-2894564

NTEE code info

Alliance/Advocacy Organizations (E01)

Alliance/Advocacy Organizations (F01)

Mental Health Disorders (F70)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Approximately 1 in 100 adults -- or between 2 and 3 million people -- in the United States have OCD. OCD also affects approximately 1 in every 200 children. Furthermore, it takes the average person with OCD 17 years from the onset of symptoms before they receive an appropriate diagnosis and effective treatment. Unfortunately, there are a number of barriers to accessing effective treatment, including a lack of providers with specialized training in OCD and persistent stigma surrounding mental health issues.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

OCD Awareness Week

OCD Awareness Week is an international effort that takes place annually during the second week of October, with the goals of building an engaged online community, raising awareness about obsessive compulsive disorder, and helping more people access timely, appropriate, and effective treatment. Launched in 2009, OCD Awareness Week is now celebrated by a number of organizations across the US and around the world, with events such as OCD screening days, film and book festivals, lectures, conference, fundraisers, online Q&As, and more.

Population(s) Served
People with diseases and illnesses

On average, it takes individuals with OCD 17 years from the onset of symptoms to receive an accurate diagnosis and begin receiving effective treatment. The IOCDF is committed to changing this statistic. In 1995, we launched our flagship training opportunity for mental health professionals: the Behavioral Therapy Training Institute (BTTI). The BTTI is a three-day program that focuses on teaching cognitive behavioral therapy (CBT) -- specifically, exposure with response prevention (ERP) -- to clinicians who work with OCD and related disorders. Treating OCD is not a standard part of the curriculum in any of the therapeutic disciplines, and the BTTI is designed to meet the need for specialized training among providers with a wide range of experience and education levels. Over the years, we have added more specialized programming to the BTTI in response to growing demand. In 2013, we began offering a Pediatric BTTI for clinicians who work with children and teens. The following year, we added a Hoarding BTTI that focused on working with individuals with hoarding disorder.

In 2016, we further expanded upon the BTTI to create the IOCDF Training Institute. The Training Institute offers a comprehensive curriculum that addresses a variety of specialties and issues pertaining to the OCD and related disorders community, while providing continuing education credits to qualified professionals.

The curriculum is formatted in the style of higher education course catalogs, ranging from 100-level basic training to the 400-level advanced training. 100-level courses are designed to introduce trainees and clinicians to the world of OCD and related disorders, while 400-level courses are intended for seasoned providers who are interested in advanced topics in the field. The Training Institute also offers opportunities for online learning: several100-level classes are available online through our partnership with Massachusetts General Hospital's Psychiatry Academy, and our 300-level classes include Online Consultation Groups that allow clinicians to troubleshoot challenging OCD and related disorders cases with peers and experts in the field. As the Training Institute continues to grow, we are excited to offer more online and remote learning opportunities to further expand the global pool of trained clinicians.

Population(s) Served
Adults

Since 1993, the International OCD Foundation's Annual OCD Conference has been the only national event focused solely on obsessive compulsive disorder (OCD) and related disorders. This extraordinary event brings mental health professionals, individuals with OCD, and their loved ones together to build community and learn about the latest treatments, research, and practice in OCD and related disorders. Every year, our goal is to bring mental health professionals, people with OCD, and their families together to learn, connect, and build a stronger community. Our hope is that each attendee will be inspired to advocate in their home communities for those living with OCD.

The Conference features more than 120 presentations, workshops, and evening activities, as well as nearly two dozen support groups. Our presenters include some of the most experienced and knowledgeable clinicians and researchers in the field, as well as individuals with OCD and family members who graciously share their stories. The conference also includes professional trainings (including continuing education opportunities), 35+ support groups for a variety of populations, evening activities, receptions, and other networking activities. In 2017, we introduced a free, fully integrated Conference Mobile App that allows conference attendees to view the schedule, read presentation abstracts, and use the interactive venue map.

Population(s) Served
People with diseases and illnesses

Our Pediatric Outreach Program aims to reach not only children and teens affected by OCD, but also their friends, family, classmates, teachers, mental health care providers, and pediatricians. The Pediatric Outreach Program has two main components: raising awareness and providing general education about OCD to families, school personnel, and the general public; and training professionals to effectively diagnose and treat pediatric OCD and related disorders. Grant funds will cover the costs of conducting outreach to pediatricians, school psychologists, parents and mental health providers, with the ultimate goal of connecting them with audience-appropriate information and professional training opportunities that focus on pediatric OCD.

Our primary awareness-raising and educational strategy is our website at www.ocdinkids.org. The website provides up-to-date information on pediatric OCD to children, teens, parents, school personnel, and healthcare providers. The site’s content has been written by members of the IOCDF Scientific and Clinical Advisory Board, which is comprised of some of the leading experts in pediatric OCD. We know that one of the most effective ways to reduce the stigma surrounding mental illness is to provide personal accounts from individuals with OCD about their struggles and accomplishments in managing their symptoms. As such, an additional piece of our efforts to raise awareness about OCD includes publishing first-hand accounts from children, teens, and parents on our main website, blog, and in print in our quarterly newsletter

We have also worked with the Board to develop informational brochures, fact sheets, and FAQs about pediatric OCD and PANDAS/PANS. PANS is an acronym for Pediatric Acute-onset Neuropsychiatric Syndrome, which is associated with a variety of different infections, whereas PANDAS is a disorder associated with only streptococcal infections.

We ensure that pediatric OCD is well-represented at our Annual OCD Conference. The conference is unique in that individuals with the disorder, their family members, and mental health professionals all attend the conference together and learn side-by-side. In 2014, we began offering an intensive pre-conference training on pediatric OCD, as well as conference sessions that focused on topics in pediatric OCD and a “mini-track” devoted to PANDAS/PANS.

As part of the IOCDF Training Institute, we are expanding the continuing education and training opportunities for healthcare professionals who treat children and adolescents. After a successful pilot launch of several in-person trainings, we are re-launching our Pediatrician Partnership Program as an online educational opportunity this fall. The goal of the Pediatrician Partnership Program to ensure that pediatricians (almost always the “front door” for families who are struggling with OCD) are up-to-date in their knowledge of how to properly assess, diagnose, and treat pediatric OCD and PANDAS/PANS. This will be a companion outreach with our Pediatric Behavior Therapy Training Institute (BTTI) for mental health professionals. Launched in 2013, the Pediatric BTTI covers the specifics of assessment, diagnosis, and effective treatment for pediatric OCD. The training involves lectures, small-group case consultation, and follow-up phone consultations with pediatric OCD experts.

Our newest program under the Pediatric umbrella is Anxiety in the Classroom, an online OCD resource center for school personnel, students, and their families. The website provides general information, resources, and materials about anxiety and OCD as they relate to the school setting, as well as more specific tools for teachers, administrators, and other school personnel who may work with students with anxiety or OCD. Parents and students will also find tools and information to help them advocate for any specific needs they may have at school, in addition to educating their teachers and classmates about OCD and anxiety.

Population(s) Served
Children and youth
Parents

In 2012, Denis Asselin walked over 500 miles -- or roughly 1 million steps -- from his home in Cheyney, Pennsylvania to Boston, Massachusetts in memory of his son, Nathaniel. Nathaniel took his own life at just 24, after a long struggle with severe body dysmorphic disorder (BDD) and OCD. After Nathaniel's death, Denis decided to embark on a pilgrimage to honor Nathaniel and raise awareness about the disorder that stole his young son's life. On June 5, 2012, Denis completed his walk in Boston and was greeted by the staff of the International OCD Foundation, as well as friends, family, and members of the OCD community at a rally to honor Denis and support BDD and OCD awareness. The first 1 Million Steps 4 OCD was created the following year in Boston, with the goal of raising awareness, funds, and hope. The walk has since spread to four U.S. cities and countless communities overseas, as well as a virtual "walk" that allows our supporters to participate from anywhere around the world.

Population(s) Served
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of unique website visitors

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of paid participants in conferences

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, Adults, People with diseases and illnesses

Related Program

Annual Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of community events or trainings held and attendance

This metric is no longer tracked.
Totals By Year
Related Program

IOCDF Training Institute

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This includes all BTTI sessions

Number of participants attending course/session/workshop

This metric is no longer tracked.
Totals By Year
Related Program

IOCDF Training Institute

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This includes all participants in BTTI sessions

Number of Advocates in our Advocate program

This metric is no longer tracked.
Totals By Year
Related Program

OCD Awareness Week

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of clients participating in educational programs

This metric is no longer tracked.
Totals By Year
Related Program

IOCDF Training Institute

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Since our founding in 1986, we have established ourselves as the premier resource for information about OCD and related disorders (e.g., hoarding disorder, body dysmorphic disorder), as well as the nexus of a broad international community of individuals with OCD, their family members and loved ones, and mental health professionals and researchers. We are a donor-supported nonprofit organization with affiliates in 25 states and territories in the U.S., in addition to global partnerships with OCD organizations and mental health non-profits around the world. Our programming is designed to improve the lives of those living with OCD and related disorders. Every year, more and more individuals in the OCD community turn to the International OCD Foundation (IOCDF) as a trusted resource. We continue to expand our impact, increasing access to critical resources, programs, and services to all those living with and affected by OCD or a related disorder.

The IOCDF celebrated its 30th anniversary in 2016. That year, we saw our annual "1 Million Steps 4 OCD" Walk participation grow significantly, launched our Behavioral Therapy Training Institute for mental health providers, and added our new Hoarding website to our family of sites. As the "go to" resource for OCD, we are always looking to improve our programs and service delivery. In the coming years, we will focus on the following goals:

1. Increase awareness and improve access to up-to-date resources for those affected by OCD and related disorders.
2. Expand our state-of-the-art education and training opportunities for those affected by OCD and related disorders as well as the varied professionals who provide care.
3. Continue to build a highly engaged, mutually supportive community
4. Establish a strong organizational infrastructure to ensure long-term success and growth
5. Improve research into OCD and related disorders

1. Develop strategic and complimentary partnerships with other organizations to expand the reach of our programs and campaigns.
2. Expand and develop IOCDF website content to address the needs of a broader group of audiences, including schools and community members.
3. Increase international reach and engagement.
4. Develop and launch a comprehensive curriculum of education and training opportunities to a range of domestic and international audiences, including mental health professionals, medical professionals (particularly pediatricians), school personnel (particularly teachers and school social workers/school psychologists), community responders within the hoarding disorder community, members of the OCD community (kids, teens, adults and their families).
5. Expand and develop avenues for “virtual" community support and engagement
6. Improve and expand our data infrastructure to enable better reporting and analytics, which will inform communications, marketing, membership, and development initiatives.
7. Prioritize research grant funding based on research that is recent, needed, and consistent with the mission of the IOCDF.

We currently have thirteen full-time employees, one part-time employee, and three volunteers at our headquarters in downtown Boston. We are governed by a fourteen-member Board of Directors that meets on a quarterly basis, and we also have a 51-member Scientific and Clinical Advisory Board comprised of leading experts in the field of OCD and related disorders. The SCB contributes resources to our websites, newsletters, and outreach materials.

We are an independent, donor-supported organization, and we continue to generate engagement and participation from all corners of our community through our local affiliates, ambassador program and OCDvocate program.

Our experience, Board involvement, and loyal donors provide the solid foundation to advance our mission: helping all individuals affected by Obsessive Compulsive Disorder (OCD) and related disorders to lead full and productive lives.

Please visit our web site to learn additional details about the accomplishments mentioned below.

Our training and education programs serve an expanding audience of therapists and clinicians. Our public programs such as our annual Conference and Walk events draw an increasing number of participants year to year. Finally, we've funded some of the most dedicated and inspiring researchers in the field, providing 1.3 million dollars in grants to advance our understanding of OCD and related disorders.

We are excited about the future and look forward to the day when there is no stigma regarding issues of mental health. We can continue doing our work to improve access, provide resources, and fund research. We want to grow our capacity to train more professionals, reach more individuals, and help influence the public dialogue around OCD and related disorders. We're eager to engage with more individuals, and partner effectively to advance the mission of the International OCD Foundation.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To strengthen relationships with the people we serve

  • Which of the following feedback practices does your organization routinely carry out?

    We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

International OCD Foundation, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

International OCD Foundation, Inc.

Board of directors
as of 06/18/2024
SOURCE: Self-reported by organization
Board chair

Ms. Susan Boaz

The Galway Co.

Term: 2011 -

Diane Davey

McLean Hospital

Denise Egan-Stack

Denis Asselin

Ron Prevost

OCD Oregon

Jo-Ann Winston

Winston Flowers

Elizabeth McIngvale

Baylor College of Medicine, Peace of Mind Foundation

David Calusdian

Sharon Merrill Associates

Joy Kant

Museum of Fine Arts, Boston

Patricia Perkins

Carol Taylor

Chris Trondsen

Jenny Yip

Shawn Assad

Crystal Fulwood

Ben Gambrel

Michael Jenike

Organizational demographics

SOURCE: Self-reported; last updated 6/18/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 10/31/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.