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The 22q13 Deletion Syndrome / Phelan-McDermid Syndrome Support Group provides six support services to the 22q13 Deletion Syndrome community.
When a family with a new diagnosis contacts The Support Group, we provide “first contact” information. They receive a copy of the information book from the most recent conference, an invitation to join the parents’ Web forum, a copy of “Raising a Child with 22q13 Deletion,” placement on the Deletion 22q13 UPDATE newsletter mailing list, and a welcome letter from their respective regional representative.
The Support Group’s newsletter is published every three months, in March, June, September and December. It contains articles and updates of interest to parents, including news from researchers, 22q13 Deletion Syndrome Foundation updates, and informal topical articles by parents.
Our web site offers new parents and others who are seeking information top-level discussions of the syndrome’s symptoms as well as contact information for the Support Group and researchers, and links to join the discussion forums.
We provide two discussion forums using Yahoo E-group. The first is the 22q13 E-group, mostly used by parents to trade ideas and discuss events and issues. 22q13 for Professionals has 40 members and is designed for therapists, researchers, medical providers and educators.
The Foundation provides a booklet titled “Raising a Child with 22q13 Deletion,” also known as “The Parents Guide” to all members of the Support Group. This guide was compiled by two of the parents in the Support Group with contributions from dozens of our parents, researchers and therapists. The guide is updated annually, with the current version providing nearly 60 pages of easy-to-read information in layman’s terms to quickly parlay information to new parents and caregivers who are joining the group. The guide is not copyrighted and is normally provided in digital form to allow parents to distribute the information freely to professionals working with their children.
The Foundation hosts a biennial conference in Greenville, SC, to bring families and researchers together to exchange information and ideas. This conference is the centerpiece of The Foundation, solidifying interactions through personal contact and energizing the group to strive for new levels of support and more active remote communications between conferences. Each attendee receives an updated conference notebook with conference agenda handouts, family pictures and contact information, copies of recent relevant medical/genetics journal articles, and other information of value to families. The conferences in 1998, 2000, 2002 and 2004 were made possible through the support of the Greenwood Genetic Center in Greenwood, SC, and the financial generosity of The Mikel Foundation of Sullivan’s Island, SC.
The 22q13 Deletion Foundation was federally recognized as a 501(c)(3) non-profit organization in July 2003. The Foundation is the umbrella group that organizes the biennial Support Group meetings in Greenville. The parents charged The Foundation with establishing a vision for our Support Group and finding ways to achieve that vision. That vision will help us to achieve our mission, which is “to build an alliance of family support for individuals with the chromosome 22q13 deletion and to provide families and professionals an opportunity for scientific education and information exchange.”
The Foundation is the fund-raising arm of the Support Group. We have received grant money to pay for expenses related to our biennial meeting in the past, but a major goal of ours is to identify other sources of funding. Any money we raise goes directly to benefiting our children and improving their lives.
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