History

To support us, the EEIP began a monthly “playgroup” at Mayfield School to bring us together to ask questions and share concerns about our babies, about Down syndrome, and about the future. It was wonderful being with other moms and little ones who were on a shared journey.

When we began receiving services from Early Intervention, the playgroup was discontinued. We missed it and decided to continue meeting on our own to share information and support each other as our kids grew and achieved new skills – on their own time. It was so wonderful to rejoice when each little one learned to roll, sit, or say their first word in a safe and supportive environment, without comparison to the “normal milestones.”

We knew we deserved better information at birth, and we also wanted access to the “new” research in education and medical care for our children that was really exploding at the time. Coincidentally, the Canadian Down Syndrome Society had formed the year before, so we quickly established a relationship with them and were able to utilize their information and expertise to keep us up to date.

The Edmonton Down Syndrome Family Support Group

The Edmonton Down Syndrome Family Support Group was started in 1988 by our four families. We met in a playroom at the Glenrose Hospital on the second Saturday of each month. We came as families – moms, dads, the odd grandparent, and all the kids in tow.

We soon learned how different each child was and how much they resembled their own families. We started by sharing information about services, information we had read, and practical suggestions based on our own child-rearing experiences. We talked about how to motivate our kids to move and learn.

We were very informal. We had backyard barbecues and celebrated our kids’ successes. Initially, a small group of parents shared a vision and met together over coffee. As our group evolved, we borrowed space for a monthly meeting in a basement room at the Glenrose Rehabilitation Hospital. We began inviting teachers, doctors, and anyone else we could think of to share information with us.

We found some babysitters through the YWCA Family Relief Service to look after the children while the parents met. The EEIP let new families know that we met on a regular basis and encouraged families to contact us if they were interested.

Growing Our Vision

As we grew, we began wanting to do more for our kids and our families. We evolved to the point of organizing a volunteer Board of Directors made up of parents.

We have been blessed with many capable parents who have contributed their time and energy to help us meet the needs of families and their children. In 1995, we incorporated as a charitable organization under the name Edmonton Down Syndrome Society and hosted our first national conference for the Canadian Down Syndrome Society.

We have since hosted CDSS National Conferences in 1995, 2001, and again in 2015.

Since 1995, we have had tremendous financial support from the Daytona Group of Companies. They were there at the beginning to help us raise funds for our first National Conference and continue to be our strongest community supporters to this day.

Creating a Medical Clinic

In 2007, in partnership with Capital Health (now Alberta Health Services), the EDSS funded a pilot project to develop a Paediatric Down Syndrome Medical Clinic at the Stollery Children’s Hospital.

We provided funding to hire a full-time nurse for two years to support the Clinic. This project was so successful that, after two years, the program received full funding through Alberta Health Services and became an integral part of health care for our population. Its caseload now exceeds 350 children.

Continuing to Grow

In 2024, we focused on expanding our programs and hired our first Program Manager with the support of four funding partners and donors: the Edmonton Community Foundation, Stollery Charitable Foundation, the Cliff Lede Charitable Foundation, and The William and Florence Lede Family Foundation.

Looking back, what began with four families meeting together for support has grown into an organization that continues to advocate, support, connect, and create opportunities for people with Down syndrome and their families.

I am proud to have been part of those early beginnings and to have witnessed the Edmonton Down Syndrome Society grow from a small group of parents sharing coffee and concerns into the organization it is today.