International OCD Foundation

Best estimates are that about 1 in 100 adults – or between 2 and 3 million adults in the United States – currently have obsessive–compulsive disorder or OCD.[2][3] There are also at least 1 in 200 – or 500,000 – children and teenagers that have OCD. That means four or five children with OCD are likely to be enrolled in any average size elementary school. In a medium to large high school, there could be 20 students struggling with the challenges caused by OCD.[4]

In 1986, the International OCD Foundation – originally the Obsessive Compulsive Foundation – was created by a small, dedicated group of individuals who had OCD. They were all participating in research studies at the Connecticut Mental Health Center[5] in New Haven, CT. The principal investigator on the studies was Wayne Goodman, M.D., a junior faculty psychiatrist who started the OCD program at Yale University School of Medicine during his residency training there. It was also Dr. Goodman's idea to bring the group together.

Originally the plan had been to just form a self-help group, but as soon as they got together they realized that there was a great deal of work to be done to defeat OCD. So in November 1986, they started the Foundation as a way to get the word out about OCD and its treatment. This was the first time for many of them to find some relief from OCD and to meet others who were also suffering from OCD. Being together inspired them to start working together to help others suffering from OCD.

Before the first meeting, some of the members sent a letter to ABC's 20/20 describing OCD and suggesting that the producers do a segment on it. As soon as the group got together in 1986, they drafted a brochure explaining OCD with the help of Dr. Goodman and put together notices giving the locations of the 22 locations around the country where the trials were taking place.

In March 1987, John Stoessel of 20/20 featured a segment with Dr. Goodman and one of his patients, another Foundation founder. The reaction was immediate and overwhelming. The network television show opened the door for thousands of people to step forward and put a name on their illness. The small corps of founders were flooded with 20,000 inquiries in the days following the 20/20 segment. While they recognized their own need for support and more information, they were not prepared for the tremendous need throughout the country. A PO box, a small grant for long distance phone calls, and weekly meetings were used to answer all inquiries and to match patients with the 22 clinical trial sites throughout the country.

Within the year, the Obsessive Compulsive Foundation – now the International OCD Foundation – was formalized as a not-for-profit corporation and the group began mailing out the locations of the 22 sites where treatment was being provided, its new brochure and a newsletter to spread the word on OCD and its possible treatments. A Scientific Advisory Board, composed of researchers and treatment providers from the 22 clinical trial sites, was organized and led by Dr. Goodman.

By 1988, the Foundation was ready to bring information to the psychotherapy community. Board members set up an information booth and attended the annual meeting of the American Psychiatric Association. The founders attended other meetings and conventions, and they realized the need to provide information not only to people seeking treatment, but also to the mental health community so that treatment was appropriate and accessible.

In 1989, the Foundation hired its first paid staff. Funding came first from pharmaceutical companies, but membership grew rapidly providing operating funds and a national network. The Foundation provided guidance on creating OCD support groups and 52 were established across the country.

The clarity of the vision of the founding members facilitated the depth and breadth of the Foundation's growth. Within a decade, the Foundation established the Behavior Therapy Training Institutes (BTTI)[6] which train therapists across the country, research awards for studies on OCD, an Annual Conference, publications and videos, comprehensive educational materials about OCD in children for teachers, a website and a bi-monthly newsletter.

In 2007, the Board of Directors voted to move the Foundation from New Haven, CT to Boston, MA. With a 100% turn over in staff, this marked a significant transition for the 20-plus year old organization. Today, the Foundation has 12 individuals serving on the Board of Directors, 9 full-time paid staff, 47 Scientific Advisory Board members, 22 affiliates, 6,000 members/financial supporters, 32 Institutional Members and an operating budget of 1 million dollars. Funding for the Foundation's programs come from donations, membership fees, and grants. The International OCD Foundation no longer accepts money from pharmaceutical or biomedical companies.

The mission of the organization at its founding is much the same as today: education, awareness, training, accessing resources and research. In 2009, the IOCDF hired Teak Media to help promote awareness about OCD and effective treatments. The collaboration between Teak and the IOCDF resulted in almost 100 media hits in newspapers, online, in magazines, and has been featured on Nightline and CNN. Teak regularly accesses the IOCDF's Speakers Bureau. The Speakers Bureau members include people with OCD who understand firsthand the challenges of this disorder in addition to well-known clinical and research experts who have treated people with OCD.

Late in 2009, a newly designed website was launched with links to social networking sites including Facebook, Twitter and YouTube. The website also continues to be a source of information about OCD and related disorders, effective treatment, a database of 250 support groups, 1,000 treatment providers, and 30-plus OCD intensive treatment programs. Additionally, in Spring of 2010, the IOCDF launched a virtual Hoarding Center. In 2010, the Foundation hosted its 17th Annual Conference. Over 1,000 individuals attended this year including those with OCD, their family members, treatment professionals and researchers. The organization continues to distribute quarterly newsletters, provide three Behavior Therapy Training Institutes around the country annually, and continues to fund OCD related research.

Additional initiatives the IOCDF has prioritized this year include revamping and updating the “OCD in the Classroom” program, launching a Pediatric OCD website, promoting awareness through OCD Awareness Week events, and building and developing international resources for individuals suffering with OCD around the world.

• International OCD Foundation