Having a child with Down syndrome can be challenging, and often schools and local communities can only go so far in helping you with your child’s specific needs. Parents can benefit greatly from becoming involved in an advocacy/support group. There are many organizations that advocate for and provide information about Down syndrome and its many challenges. Listed below are some of these organizations along with websites and membership information.
National Down Syndrome Society
Founded in 1979, the National Down Syndrome Society (NDSS) is a national non-profit organization devoted to advocating for “the value, acceptance and inclusion of people with Down syndrome.” It is involved in public policy, improving services and educational opportunities for people with Down syndrome, and advancing scientific research. NDSS aims to increase public awareness of the condition, and has hundreds of local affiliate groups.
The NDSS website is an exhaustive collection of information regarding every aspect of Down syndrome, including education, healthcare, and legislation. It features an array of articles about early intervention, inclusion, speech therapy, and occupational training. It would take many hours to go through everything NDSS has to offer. The local affiliate in Winston-Salem is the Piedmont Down Syndrome Support Network (http://www.pdssn.com/). You can sign up for a newsletter, make a donation, and call a helpline (1-800-221-4602).
Website: http://www.ndss.org/index.php. Phone: (800) 221-4602.
National Association for Down Syndrome
This organization’s mission statement reads “our mission is to ensure that all persons with Down syndrome have the opportunity to achieve their potential in all aspects of community life.” The National Association for Down Syndrome (NADS), founded in 1961, provides parent workshops and support programs, medical services for individuals with Down syndrome, and conducts seminars on education, communication, and health care. It also holds a bi-annual conference in Chicago that brings together medical professionals, educators, parents, and others involved with the advocacy and support of people with Down syndrome.
NADS claims to be the oldest organization in the U.S. dedicated to Down syndrome education and support. You can become a member through the website or by mail. Members receive a newsletter every other month and get updates on support programs and seminars. The organization opened the Adult Down Syndrome Center in 1992 in Park Ridge, IL, a medical center that serves the needs of adolescent and adult patients with Down syndrome. NADS directly serves the Chicago area but has members nationwide who benefit from its educational programs and seminars.
Website: http://www.nads.org/. Phone: (630) 325-9112.
National Down Syndrome Congress
The National Down Syndrome Congress (NDSC) started in 1973 as a group of parents of children with Down syndrome and self-advocates, along with medical professionals, who wanted to promote public awareness and community support for people with Down syndrome. The organization stresses on its website that the civil rights and public acceptance of those with the condition has improved considerably and that the NDSC wants to continue fighting for equal opportunities for people with Down syndrome in all areas of community life. NDSC is heavily involved in influencing public policy at the local, state, and federal levels. It describes itself as a “grassroots, member-driven organization” that has members from a variety of fields. To join, you must pay a one-time fee. Members get access to a wide range of informational materials, including the Governmental Affairs Newsline and Down Syndrome News.
Website: http://www.ndsccenter.org/. Phone: (800) 232-6372.
