What is the Sotos Syndrome Support Association?

What is the SSSA?

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Organized in 1988, the Sotos Syndrome Support Association (SSSA) is made up of families, physicians, genetic counselors, and health care agencies throughout the United States. The SSSA is a non-profit organization which is incorporated in the state of Missouri.

The SSSA is an Associate Member of the National Organization of Rare Disorders (NORD) and is a member of the Alliance of Genetic Support Groups.

The SSSA's annual conference is held each summer in a different geographic region. This conference is an excellent venue for families to interact as well as obtain a wealth of information from a variety of professionals. The 2005 annual conference was held in San Antonio, TX. The 2006 annual conference was held in Los Angeles (Anaheim), CA. The 2007 annual conference wil be held 8/3-8/5 in Omaha Nebraska . Future conferences are planned as follows: 2008 - Canada ; 2009 - TBD.

The SSSA has a research library with over 160 published articles available to members. There are audio and video tapes of previous conferences available for purchase. Many families have mentioned how helpful the list of members and addresses has been in keeping in touch with other families in their region or whose children have similar strengths and weaknesses.

Purpose of the Sotos Syndrome Support Organization

A social support environment for professionals and families of individuals affected by Sotos Syndrome so they can meet, exchange ideas and help one another cope with the condition.
An understanding of the condition through education.
A quarterly newsletter for members to network ideas, articles, and inspirations.
An annual meeting in which to meet, organize, and discuss association business.
An annual conference for professionals and families to hear experts in genetics, neurology, psychology, and education.
An opportunity for professionals working with individuals affected by Sotos Syndrome to collect data for research and to meet colleagues.

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