Touchdown 21: Switzerland-Canada Connection.
By Oleksandr (Sasha) Kondrashov When I recently visited Switzerland I attended the Touchdown21 Exhibition in Bern and met Dr. Katja de Bragança and Anne Leichtfuß and learn more about TOUCHDOWN21 research project that is made by people with Down syndrome, and is about people with Down Syndrome. The research team collects information and wants to look at this topic from many different angles and to bring together people who are thinking about this topic.
I decided to add the update from Canadian Social Work Educator knowledge base on current research in Canada related to people with Down Syndrome. I researched resources and included multiple hyperlinks to share with Katja and Anne and contribute to the TOUCHDOWN 21 research project through my blog space. I will keep updating this post, so please feel free to send me more links and information to keep raising awareness about lives of people with Down Syndrome in Canada and around the world.
The Canadian Down Syndrome Society (CDSS) is a non-profit organization that provides Down syndrome advocacy in Canada. CDSS works with 45,000 Canadians who have Down syndrome, has 50 local groups, and 12 Affiliate organizations. CDSS was established in 1987 to provide support to and advocacy for families and people with Down syndrome. CDSS organize the Canadian Down Syndrome Conference to act as a platform to share current developments and information from experts in their respective fields, as they relate to Down syndrome.
CDSS also organizes Go21 movement that focuses on positive momentum for people with Down syndrome and their families in Canada. 21 refer to the extra chromosomal material from the 21st chromosome that determines if a person has Down syndrome. The Down syndrome community identifies with 21 as a unique number that stands out.
Another awareness raising campaign was launched by The Canadian Down Syndrome Society and FCB’s “Down Syndrome Answers” to use YouTube videos to answer parents’ common questions and dispel misconceptions about Down syndrome. If you want to learn the “S” word campaign and how Canadian Down Syndrome Society fights the ‘S’ word visit this page.
CDSS has a goal to educate everyone about the great things that people with Down syndrome can – and do – accomplish. Check CDSS resources page and watch the documentary “See the Ability” where eleven exceptional adults with Down syndrome want Canadians to see the ability, celebrate diversity, and picture the possibilities. Kaitlin Atkinson Family Resource Library also created a resource page on Down syndrome. Children Supports Solutions offer their list of resources for parents here. Sick Kids in Toronto also provides a comprehensive Resource Directory for Children and Youth with Down Syndrome Toronto
One can also read Terri Coles article All The Ways People With Down Syndrome Contribute To Society written on March 21 which is World Down Syndrome Day where author discusses how attitudes about Down syndrome have shifted considerably in recent decades.More information about World Down Syndrome Day and Canadian contributions can be found here. Canadian Down Syndrome Awareness Week is in November. One can also visit Provincial Down Syndrome Societies and local organization. The complete list is available online.
Another inspiring article by Isabelle Khoo that focuses on Canadian Photo Series “Better With You” to challenge stereotypes about the disorder.
Abilities magazine has also dedicated section about living with Down Sydnrome.
Globe and Mail article A perfect fit for those with Down syndrome focuses on Downs Designs Dreams company, special clothing for people with Down Syndrome. Their Kickstarter campaign is available online
A research brief Down syndrome and Alzheimer’s disease is offered by Alzheimer Society of Canada and provides information on supports for people who have Down Syndrome and Alzheimer’s.
An incomplete and expanding list of people with Down Syndrome is available on Wikipedia.
One can also read Downs: the History of a Disability book by David Wright that traces the social and medical evolution of the condition, while also shedding light on one of society’s most derided mental disabilities.
Canadian Medical Association in 2008 published an article by Renate Lindeman Take Down syndrome out of the abortion debate where the author states: “At the end of the day, when I look at my daughters, April and Hazel, both living with Down syndrome, I don’t see the genetically flawed children that prenatal screening is trying to eliminate. I see kind-hearted, happy children who are giants in loving and living, who enrich our human genetic diversity and who teach me and everyone they meet what it is to truly feel.”
An article that focuses on assistive technology for people with down syndrome provides an overview of how technology impacts students with down syndrome in Bahrain. Alammary, J., Al-Haiki, F., & Al-Muqahwi, K. (2017). The Impact of Assistive Technology on Down Syndrome Students in Kingdom of Bahrain. Turkish Online Journal of Educational Technology-TOJET, 16(4), 103-119.
Additional articles on current research in Canada include
Beyzaei, N., Stockler, S., McKenna, D., Hanbury, P., Chan, M., Tse, E., … & Ipsiroglu, O. (2017). Comorbidities and access to health care in a Canadian cohort of individuals with down syndrome. Sleep Medicine, 40, e142.
After conducting the study the researchers are developing a Down syndrome medical care app for parents to enable them “(i) the gathering of core descriptive symptoms and (ii) to optimize clinical care management by standardizing recommended healthcare investigations and connect professionals across sub-specialties and multiprofessional teams” (p.e142).
Tse, E., Marwaha, A., Beyzaei, N., Berger, M., Chan, M., McKenna, D., … & Ipsiroglu, O. (2017). Sleep problems in children with down syndrome. Sleep Medicine, 40, e142.
After conducting the study in AB, BC and ON provinces researchers suggest bridging the gaps by enabling parents to “share observation-based symptoms in a structured way with involved professionals using a DS medical care app” (p.e142).
Schroeder, H. L., Joanes, M., Small, A., & Maramraj, R. (2015). Down syndrome and quality of life: A case report. International Journal of Medical Students, 3(2), 112-114.
After reviewing one case study researchers concluded that “Multiple medical interventions, along with strong family support, positively contributed to the patient’s quality of life. Therapies targeting cognition could result in the maintenance of quality of life and, ultimately, lower health care costs.”
Colozzo, P., McKeil, L., Petersen, J. M., & Szabo, A. (2016). An early literacy program for young children with Down syndrome: changes observed over one year. Journal of Policy and Practice in Intellectual Disabilities, 13(2), 102-110.
The researchers describe an early intervention literacy program with 15 English speaking Canadian students with DS aged 3–6 years. This study provides support for “literacy interventions that combine phonological awareness, word analysis, sight word training, and shared book reading with children with DS as young as 3 years of age with varying levels of language development”.