October is Down Syndrome Awareness Month
What is Down syndrome?
In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.
This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm—although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.
How common is Down syndrome?
According to the Centers for Disease Control and Prevention, approximately one in every 700 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition. About 6,000 babies with Down syndrome are born in the United States each year.
When was Down syndrome discovered?
For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn’t until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down the recognition as the “father” of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.
In recent history, advances in medicine and science have enabled researchers to investigate the characteristics of people with Down syndrome. In 1959, the French physician Jérôme Lejeune identified Down syndrome as a chromosomal condition. Instead of the usual 46 chromosomes present in each cell, Lejeune observed 47 in the cells of individuals with Down syndrome. It was later determined that an extra partial or whole copy of chromosome 21 results in the characteristics associated with Down syndrome. In the year 2000, an international team of scientists successfully identified and catalogued each of the approximately 329 genes on chromosome 21. This accomplishment opened the door to great advances in Down syndrome research.
National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals with Down syndrome. The organization advocates for federal, state and local policies on behalf of people with Down syndrome across the country.
Advocacy is a powerful way to influence change by making your voice heard. Through NDSS’ grassroots advocacy programs, everyone with a connection to Down syndrome is encouraged to become an advocate. The most impactful voices are those of individuals with Down syndrome, or self-advocates. By sharing your story, you can ensure a brighter future for all individuals with Down syndrome.
Advocacy 101—How can I get involved?
* #DSVOTES®—#DSVOTES is an initiative by Self-Advocate Becoming Empowered (SABE) to support self-advocates in encouraging political participation and provides materials and trainings on voting. You can get involved by registering to vote as a role-model for people with disabilities learning the process to vote. Learn more at ndss.org/programs/national-advocacy-public-policy/dsvotes/. View SABE’s website sabeusa.org and voting information, sabeusa.org/govoter/voting-info.
* #DSWORKS®—The goal of #DSWORKS is to encourage corporations and businesses to invest in hiring people with Down syndrome, and increase the number of opportunities for individuals with Down syndrome to work in meaningful and competitive employment settings. #DSWORKS is an opportunity for self-advocates, community members and elected officials to come together to increase the employment rate for people with disabilities while ensuring businesses and corporations are financially secured. Get involved at ndss.org/work/dsworks. You can find self-advocate owned businesses at ndss.org/work/self-advocate-small-businesses.
* DS-AMBASSADOR®—DS-AMBASSADOR is an opportunity to build relationships with elected officials at the federal, state and local level of government to continually raise awareness, educate and advocate for public policy solutions that help the Down syndrome community. Self-advocates can get an opportunity to inspire social change to elected officials by sharing personal stories. Anyone who wants to be involved as a DS-Ambassador can learn more at ndss.org/programs/ndss-ds-ambassador-program.