First Family Support Group meeting in Greenville. Twenty of the 23 families who were known at the time to have children with 22q13 Deletion Syndrome attend. The Greenwood Genetic Center and The Mikel Foundation, a South Carolina charitable group interested in helping families with special needs children, underwrite the meeting.
First edition of the 22Q13 Deletion UPDATE quarterly newsletter published.
Second Support Group conference in Columbia, South Carolina. More than 30 families attend and Support Group membership roughly doubles.
A Yahoo message group is set up so parents can keep in touch between meetings.
Web site launches and a logo is designed.
More than 40 families attend the third conference as it moves back to Greenville and membership moves past the 100 mark.
Families in the United Kingdom form a regional support group that meets for first time.
Planning begins on establishing the 22q13 Deletion Foundation with election of a Board of Trustees and appointment of an advisory board. Parents suggest naming the condition Phelan-McDermid Syndrome after Dr. Katy Phelan and researcher Heather McDermid of the University of Alberta.
Foundation’s Board of Directors meets in the fall at the South Eastern Regional Genetic Group Conference in Charleston, South Carolina, to plan 2004 conference.
Board agrees Phelan-McDermid Syndrome name.
The Foundation is federally recognized as a 501(c)(3) non-profit organization.
The fourth biennial conference is held in Greenville in July and is attended by 60 of the approximately 200 families affected by the syndrome. The Board of Directors approves publication of an informational brochure about Phelan-McDermid Syndrome to raise awareness as well as support fundraising efforts.
Establishment of the Regional Representative program, serving families around the world.
Foundation directors meet in April in Tampa to plan for 2006 conference and meets again in November in Atlanta.
Revamped Web site launches with emphasis on new families looking for information on Phelan-McDermid Syndrome.
About 100 families of the nearly 300 diagnosed individuals attend the fifth conference in Greenville. Board and volunteers take lead role in planning and running the conference.