AK Chapter Down Syndrome Congress

The Alaska Chapter of the National Down Syndrome Congress is a non-profit organization of parents, relatives, professionals and friends of individuals with Down syndrome. Its membership includes families and professionals from around the state of Alaska.

Our goal is:

• to provide education and disseminate information for members, new parents, and the community as a whole;
• to provide parent-to-parent support to new families of babies with Down syndrome;
• to gather socially and share experiences;
• to be an advocacy group for political effectiveness.

Services that the Alaska Chapter National Down Syndrome Congress provides include:

• lending library of up-to-date books, videos and audio cassettes. Books include books for parents with children of all ages, for professionals, and for siblings:
• information on National Down Syndrome organizations;
• "New Parent" packet with important information and contacts for new parents;
• "Member" packet with more advanced medical, educational and social information;
• Parent-to-parent support upon contact by hospital, doctor, family, etc., including hospital and home visits;
• social and educational meetings;
• community education.

There are over 360,000 families in the United States touched by
Down Syndrome.

This condition occurs in approximately one in 800 births. In the past it was thought individuals with Down Syndrome were severely or profoundly retarded. It is now known that most individuals are mildly to moderately retarded.

Down syndrome is usually caused by an error in cell division called non-disjunction.

However, two other types of chromosomal abnormalities, mosaicism and translocation, are also implicated in Down syndrome - although to a much lesser extent. Regardless of the type of Down syndrome which a person may have, all people with Down syndrome have an extra, critical portion of the number 21 chromosome present in all, or some, of their cells. This additional genetic material alters the course of development and causes the characteristics associated with the syndrome.

All parents have questions and concerns at the birth of a child. A child with a disability raises a whole new set of questions. The Alaska Chapter of the National Down Syndrome Congress tries to answer some of these questions, allay some fears and dispel myths so the family can move on to enjoy and help their baby.

Meetings are a mixture of business, education and pleasure, often including potlucks, picnics, mile-high ice cream sundays, and always good company. It is our hope to present an optimistic and realistic picture of Down syndrome to Alaskan communities and families, and to communicate our desire to have our children and friends appreciated and accepted.