Media Inquiries

Media Messages

CDSS Mission/Vision/Values

Vision:
A Canada where ALL are welcome, we embrace diversity and we value everyone equally.

Mission:
To ensure equitable opportunities for all Canadians with Down syndrome. This means, to make sure all Canadians with Down syndrome have the right supports to give them the same opportunities that everyone else has.

Strategic Priorities

Leadership - to be the primary Canadian resource on Down syndrome. Leading advances in social policy development, bioethics, human rights and social justice issues that are relative and responsive to the needs and desires of people with Down syndrome.

Communication - to build public awareness and understanding of people with Down syndrome, their value, and their contributions to their families, communities and humanity through a comprehensive communications strategy, networks and events.

Support - to support relevant research and the development of materials, tools and resources to enhance learning, well-being, community involvement, employment and life success for people with Down syndrome.

Types of Down Syndrome

There are three types of Down syndrome:

1.) 95 per cent of people with Down syndrome have Trisomy 21, which means there is an extra #21 chromosome in each cell. For people without Down syndrome, there are only two copies of chromosome #21; individuals with Down syndrome have three copies of chromosome #21.

2.) Two to three per cent of individuals with Down syndrome have translocation. During cell division, a part of the #21 chromosome breaks off and attaches itself to another chromosome, usually the #14 chromosome. About two-thirds of these translocations occur spontaneously while the rest are inherited from a parent. This type of Down syndrome can thus be inherited from a parent.

3.) Two per cent of people with Down syndrome have mosaicism. In this case, some cells having 46 chromosomes and some having 47. The percentage of cells with 47 chromosomes instead of 46 varies from person to person.

Key Messages

• Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human family and is universal across racial, gender and socio-economic lines.
• Down syndrome was named after John Langdon Down, who discovered it in the late 1800s. Down syndrome is referred to as Down syndrome, not Down's syndrome. Unlike Lou Gehrig’s disease (also known as ALS), John Langdon Down did not have Down syndrome - therefore it is not possessive, as in Down's.
• Down syndrome is present in about one in 800 births in Canada.
• Down syndrome is not a disease, disorder, defect or medical condition. People with Down syndrome are not "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention.
• There are some health concerns to be aware about: heart defects, hypothyroidism, some degree of hearing loss and vision loss. These vary from person to person. Preventative medical care with the family and physician are crucial.
  
  Down syndrome commonly results in an affect on learning style, and varies between individuals, just as physical characteristics or health concerns. The biggest challenge is to find effective methods of teaching each individual. Early intervention programs can help identify the best teaching methods soon after birth.
• Individuals with Down syndrome are people first. The emphasis should be on the person, not the disability. You might say, a person with Down syndrome, not "Down syndrome" child or "Downs baby."
• Down syndrome is a chromosomal arrangement present at conception; the term "birth defect" is not correct. People with Down syndrome usually have mild to moderate intellectual delay. The terms mental retardation and mongoloid are extremely inappropriate and outdated.
• Avoid generalizing people with Down syndrome as "always loving", "always smiling", or "perpetually happy." People with Down syndrome are not all alike. The diversity of characteristics among people with Down syndrome is similar to that of the general population.
• Avoid judgmental terminology. A person with Down syndrome is not "suffering from," "a victim of" or "afflicted with" Down syndrome. Down syndrome is not a disease and these references only diminish a person's dignity. Suggestions include "living with Down syndrome" or "has Down syndrome."
  

Media Contact

Kaitlyn Pecson
Design and Communications Coordinator, Canadian Down Syndrome Society 
Office: (403) 270-8500    Toll free: 1-800-883-5608