International OCD Foundation
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| Founded | 1986 |
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| Founders | Wayne Goodman, Patricia Perkins, Frances Sydney |
| Type | Registered non-profit |
| Focus | Obsessive Compulsive Disorder |
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Employees
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10 |
| Website | https://iocdf.org |
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. There are also at least 1 in 200 – or 500,000 – kids and teens that have OCD. That means four or five kids 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.
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 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 ABC’s 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.
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