Canadian Down Syndrome Awareness week October 19-25th is a great opportunity to reflect on one of the urgent priorities of this community. In 1950, only 1% of adults with Down syndrome lived to 40 years of age. Today, over 30% of Canadians with Down syndrome are over 40. This dramatic demographic shift, confirmed by a recent 2025 population study, has created an urgent gap in our current healthcare systems and training.
Now, we need Canada’s healthcare systems to evolve to meet the needs of the growing adult and senior population with Down syndrome so they can receive the care they deserve.
Read the attached information prepared by our colleagues at CDSS below, and help advocate for better health care for our aging population.
At EDSS we are creating our advocacy strategy and we will be working with our members to determine priorities to develop the overall strategy. We will reach out to you soon with more details. Please continue to use the free resources provided to you by dropping in to use the playroom, or resource library, reaching out to Meghan for program support or visiting our family resources page for more information on many topics to support families and all ages. If there is something you need and you have not found support for, please contact me at janet@edss.ca. I want to hear from you.
CDSS is hosting a 7 week course for adults over 40 to help educate and improve brain health. Check out the short video and a bit more information about the course below to see if you qualify and are interested in joining.
Brain Health-IDD Course for Adults with Intellectual and/or Developmental Disabilities
Are you interested in a virtual course on brain health and aging?
Watch a short video about the course or read more information below: https://youtu.be/KrnpfKBCljk
A group of researchers at the Centre for Addiction and Mental Health (CAMH) are studying a virtual education program for aging adults with intellectual and developmental disabilities (IDD), family caregivers, and service providers from across Canada. This online course is designed and delivered by adults with IDD, alongside medical and mental health experts specializing in the care of adults with IDD.
Who Should Attend?
- Adults with an intellectual and/or developmental disability aged 40 years or older
Dates:
- Every Wednesday, October 29 to December 10, 2025 | 1:00-2:30pm Eastern time
Program Highlights:
- Attend seven weekly 90-minute interactive sessions at the scheduled time above
- Receive a course workbook, with resources
- Learn about brain health and aging, and interact with other adults with IDD across Canada
- Be interviewed three times (about 40-50 minutes each time)
- Before the course, at the end of the course, and 14 weeks after the end of the course
- Optional: Wear a Fitbit watch for a two-month period during the study
- Receive a gift card at the end of the study for participating
View our Flyer | Watch a Short Video about the Course | Register Now: https://redcap.link/9uja13v6
Participation is completely voluntary and will not affect any present or future services provided by CAMH. Any information collected for this study will be confidential.
For more information or support, please contact the CAMH research staff by email BrainHealthIDD@camh.ca or by phone 437-328-6761. This course is offered part of a research study titled, Promoting brain health: A national capacity building project for aging adults with intellectual or developmental disabilities, family caregivers and service
Reminders
October is Down Syndrome Awareness Month — a time to celebrate the abilities and achievements of people with Down syndrome while promoting inclusion, acceptance, and awareness.
This month offers us the opportunity to share stories, spread awareness, and highlight the importance of creating inclusive communities for individuals and families. Together we can create a world where every person with Down syndrome is valued and empowered.
Did you know?
Through the Eye See…Eye Learn program, children in kindergarten are eligible to receive free glasses and frames. Be sure to ask your optometrist about it!
We have launched a new Literacy and Communication Pilot Program this fall. It will be based on the Natalie Hale’s Whole Child Reading approach and be delivered through our Speech Therapy professional service providers. Read further on the Family Support page here to learn more and let us know your thoughts.
30th Anniversary - History Photobook
We are still working on a history photobook and we would love to feature your family!
Whatever your journey has been, I would like to invite you to share with us a bit about your experiences – sharing your favorite memories and your family photos – both “then” and “now”. If you have a baby/toddler photo and then a current family photo that would be great to include in our 30th Anniversary photo album project.
We are loving the snapshots we are getting into the families that have contributed so far. Please add your families history to our book. Share your memories with us!
Please share your memories and photos with us at guest@edss.ca as soon as possible.
