The 22q13 Deletion Foundation has an elected Executive Board, appointed Advisory Board and five committees critical to carrying out our vision. Board members and committee members are volunteer parents of children diagnosed with 22q13 Deletion Syndrome/Phelan-McDermid Syndrome as well as professionals in the study of genetics.

All donations to the Foundation will be used to pay for the costs associated with our biennial conference in Greenville, South Carolina. To date, the Mikel Foundation and the Greenwood Genetic Center have provided money to cover many of the costs. This year 2006, the 22q13 Foundation is responsible for its own funding, so donations and fundraising has become a priority. Volunteer parents provide all of our activities — parent’s guide, newsletter, discussion forums, web site, and first contact activities — with no cost to the Foundation.

The 22q13 Deletion Foundation was federally recognized as a 501(c)(3) non-profit organization in July 2003.