Advocacy in Action: Housing Options
Thank you to Karima and Yanick Ewig for the presentation last evening regarding being a “Supportive Roommate”. Their story was full of real-life examples and advice for being a supportive roommate for people with a disability and recommendations for those who are looking at building a relationship with a potential roommate for your child. There was a tremendous response and attendance for this presentation and it was also recorded for future viewing. It can be found here.
This week our team had the opportunity to connect with our University of Alberta students who have completed their Community Service Learning (CSL) projects for EDSS. We are thankful for the creativity and engagement each of these students shared with us and our community. We will share more about each project in the weeks to come as we launch the tools that were developed.
Walk For Down Syndrome
Thank you to all of you who have started your fundraising pages for the Walk for Down Syndrome. We will have the next early bird draw prize on April 16th for all of you who have registered by the end of April 15th.
Updates
Wishing all of you who celebrate Easter a very blessed time with your family and loved ones.
Further to our member engagement session, I want to share some of the additional highlights we shared with our members during that event.
Advocacy Strategy Updates
When we asked, you shared these urgent priorities:
Health care and service navigation
Challenges accessing consistent, coordinated health care.
- Long wait times for assessments or specialist appointments
- Difficulty finding adult health care providers with Down syndrome expertise
- Support navigating medical systems
- Aging-related health needs
Our focus is to connect with our government and share the work we are doing and what we need their help with to further the voices and needs of our families and their children.
We will be encouraging support to provide better access to primary care for adults who do not have a dedicated medical clinic in the Edmonton region. We will share the research and advancements being made with our partners Global Down Syndrome Foundation and their second version of the medical guidelines for adults with Down syndrome: GLOBAL Medical Care Guidelines for Adults with Down Syndrome | Global Down Syndrome Foundation
What a wonderful World Down Syndrome Day. Our team hosted our celebration with support from our partners at the Castle Downs YMCA with rental of their community space. See the photos attached in this newsletter. Thank you to all those who attended and supported this important community event including donated treats from Carmela’s Whisk in St. Albert, Mr. Mike’s team in Grande Prairie, Mortgage Connection, Lena Daniels, Coulter Woodmansey and Kordell Jackson from the Edmonton Elks and our wonderful ambassadors and volunteers supporting our staff team! It was an amazing event and we are thankful for all the support to make it a great celebration.
Thank you also to 2 more Walk for Down Syndrome partners who made cheque presentations this week – Dustin Moss and Mortgage Connection, and the Rotary Club of Edmonton Sunrise.
Advocacy In Action
Julie Boucher, Director of Community and Family Services has been busy making connections within our medical community, and last evening we were very pleased to share a wonderful experience we curated in partnership with the University of Alberta Faculty of Medicine. We were invited to make a presentation to a classroom of new medical students and residents accompanied by 4 of our family advocates with a child born with Down syndrome. The event was informative and impactful as our families each shared their diagnosis stories with the students. Each one is different and so very relevant and significant for these enthusiastic physicians developing in their practice. Our families had a common and important message to deliver focusing on how “words matter” and each child is loved and their journey begins with this important message of their diagnosis and how it is delivered. The parents will never forget how their story began. We are also very pleased to share the current medical guidelines with these students and the news that the second edition review is currently being published and will be released later this year. You can find this update and your own copy of the medical guidelines for adults with Ds here. Please share these with your family physician.
Podcast with Kristy Wolfe, Wolfe Pack Warriors Foundation. (From Playgroups to Policy)
I was fortunate to have a conversation with Kristy Wolfe, Digital Storyteller, Executive of the Wolfe Pack Warriors Foundation. Kristy and I explore how Edmonton Down Syndrome Society Builds Belonging. Listen to our podcast to hear about joy, grit, and community: from toddler playgroups to employment readiness and a joyful runway gala, discover how EDSS builds inclusion you can feel.
We cover many topics and the ask is simple and concrete: give, amplify, connect. Volunteer at a fundraiser, attend the walk, wear mismatched socks on World Down Syndrome Day to spark conversations, or bring the medical guidelines to a local GP. If you work in education or childcare, invite EDSS to train your team. If you are an employer, explore customized roles and supports that unlock talent. The through-line is practical hope—families, clinicians, educators, and neighbors can each move one piece, and together those pieces become a reliable path from first playgroup to first paycheck, and from anxious beginnings to a life rich in friends, work, and community.
50/50 draw for World Down Syndrome Day
Now live and will finish at the Walk for Down Syndrome on Sunday, June 14th. Tickets can be purchased here.
Important ADAP Advocacy Action for Families shared by St. Albert MLA Marie Renaud:
“Learn to Advocate, the YouTube Live event I hosted yesterday evening with disability advocate Zachary Weeks and Michelle Kristinson of the Alberta Ability Network. It was a great beginning to the conversation about how we can all work together to stop the dangerous cuts to disability services being made by the UCP government.”
If you want to watch the recording of the event, here is the link: https://www.youtube.com/watch?v=OEA8MuVqg_M
Here are more links to help you keep on top of what’s happening in the legislature, and links and tools for how you can do your own advocacy.
Volunteer Opportunity – Part-time Administrative Assistant
We are looking for someone who would be interested in working a few hours 1 day a week to support the office with a variety of administrative duties. Please share your resume with admin@edss.ca if you have skills and interest to learn more.
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!
