Sotos Syndrome Support Association

The Sotos Syndrome Support Association (SSSA) is a nonprofit organization established in 1988 to support individuals affected by Sotos syndrome, a rare genetic disorder characterized by excessive growth during early childhood. The organization is incorporated in the state of Missouri and operates as a 501(c)(3), with donations being tax-deductible.

Mission and Activities

The SSSA's primary mission is to create a social support environment for families and professionals dealing with Sotos syndrome. This involves providing educational resources, facilitating networking opportunities, and offering emotional support. The organization achieves these goals through several initiatives:

• Annual Conference: Each year, the SSSA hosts a conference that brings together families and professionals to share experiences and learn from experts in genetics, neurology, psychology, and education.
• Education and Awareness: The SSSA educates families and healthcare providers about Sotos syndrome, promoting a better understanding of the condition.
• Newsletter and Communications: Members receive a regular newsletter that includes personal stories, tips, and updates on conferences and seminars.
• Research Opportunities: Professionals can collect data for research and network with colleagues through the SSSA.

Financial Overview

As a nonprofit organization, the SSSA relies on contributions, program services, and investment income. Revenue sources include member dues, donations, and income from educational materials and events. The organization maintains a positive financial position with minimal liabilities.

Affiliations

The SSSA is a member of the National Organization of Rare Disorders (NORD) and affiliated with the Alliance of Genetic Support Groups, enhancing its reach and collaboration in the field of rare genetic disorders.

Governance

The organization is run by volunteers, including family members and friends of individuals affected by Sotos syndrome. This personal connection helps tailor the support services to better meet the needs of those impacted by the condition.

Impact

By providing a platform for support, education, and research, the SSSA plays a crucial role in improving the quality of life for individuals with Sotos syndrome and their families.